The Long Hold Support Group

[[ho...]]

I talked with my doc today and told her that I wanted to try a long hold.  She was very agreeable to that idea she told me that she blames herself for the mess I'm in and I didn't disagree.  She also wanted me to think about seeing a psychiatrist that does genetic testing to see how a person's metabolism responds to certain medications.  Has anyone dealt with anything like this?  I don't want to be practiced on with other meds or should I just continue to try a long hold.  Any input appreciated.

 

Hi - That was very responsible of your doctor and impressive.  I don’t know what the testing will accomplish, because they can’t really do anything for fast metabolisms.  I am one.  I have the “red head” gene.  People that have the red head gene, or are red heads, metabolize drug’s faster than most of the population.  There isn’t anything they can do.   It could give you answers though 

 

I am glad you are going to get to do a long hold, that is really good new 

 

Marie

[[Ca...]]

Howmanytimes, yes i seem to feel better with my updose, I think I should have done it straight away and not listen to people saying « hold and stabilize » because obviously my cut was a lot...

 

Now I have to heal my wounds as you say because I’m quite traumatized, and my mood is under a dark cloud...

 

Does micro dosing helps you to have very mild symptoms ? And function ?

 

What is the name of the genetic test we can ask ? Is there a link with being thin and fast metabolisms?

 

Xx 

[[Ma...]]

Mary thank you.  I'm just so uncertain I really don't know what good the testing would do.  😕

I understand , by the time I knew the test even existed, I had already crossed to Valium and wasn't going to change again, but I guess , it could help if you needed to dose more or less often during the day. 

[Guest [...]]

Holy uteruses Batman Aunty Flo is in a bad mood this month. Oh Lordy 

 

Shayna - you crack me up and put a smile on my face!!

:laugh:

 

Flo will have been difficult as you were tapering, is my guess!

 

Winnie

 

[Guest [fl...]]

I have found the siberian rhubarb helps a lot with estrogen symptoms. It acts on the calming estrogen receptors, providing balance when the aggressive estrogen receptors are being stimulated by the estrogen peak during ovulation and also during the luteal phase when estrogen rises again (though progesterone helps during luteal but not ovulation). The germans use it as a pharmaceutical, but it is available as a supplement here. The studies are on perimenopausal women, but for some reason Life Extension calls it Menopause 731. It doesn't act on GABA receptors or the brain, so is quite safe.

 

This is a nice chart showing what is happening with hormones during the cycle. You can see the estrogen peak during ovulation with no progesterone to calm things down.

 

https://en.wikipedia.org/wiki/Menstrual_cycle

[[Di...]]

Mary and Marie thank you for your input I really appreciate all of you.

[[ho...]]

Carla - The micro dosing has been a GAME CHANGER...OMG....I am a totally different person then I was before when reducing.  Before I was cutting at 1mg every 2 weeks, and by day 2 (fast metabolism) I was feeling it, and day 4 I was SICK! And on and on....so even if I was only cutting at .5, I still would have felt it, because with my current micro dose that is exactly what happened.  I dropped: 1.99,1.98,1.97,1.96,1.95 (so .5mg) and on day 6, the day I was to drop to 1.94, I was really feeling the SX. I had actually started feeling them the day before (fast metabolism).  So I decided to hold the 1.95 for another two nights.  Then I did 1.94, I still was feeling SX ( oh, the SX were not nearly as bad as before) so I held the 1.94 for 4 nights ( one night I accidentally updosed to 1.96, went the wrong direction with the syringe...no big deal..lol) because, I didn’t want to get bad SX and wanted to function.  I resumed on Thursday night to 1.93, and last night to 1.92.  Tonight I will do 1.91 and Sunday 1.90 ( that will get me to 9 mg V)...that is the “plan” for now.  For my compound liquid V 2ml = 10mg V.

 

So right now I am just playing with the numbers.  I bought a new journal just for this process, and to be very detailed about how I am feeling (SX) and functioning.  I’m sure a plan will eventually present itself to me. 

 

I strongly encourage the DMT/Symptom based/Hold process.  This is so much better.  I was just so determined to get off this medication, and thought I could battle through it, but boy was I wrong.  I was such a mess, and although I was trying to stay so positive and grateful, and meditating and doing stretching and yoga when I could....looking back, I don’t know how I didn’t end up in the hospital.  My mental state is so much better, I am feeling better each day the DP DR is leaving, my strength is slowly coming back.  So many months couch bound most of the time, at my age ( almost 55) didn’t help my muscles and stamina, but it is increasingly getting BETTER

 

I am so glad you are feeling better and now you can begin the journey of letting your CNS start to recover, so that you can get back to you wean.  It will most likely take some time, but YOU WILL GET THERE.  Going slow going forward is the best plan.  You had talked about a longer acting benzo, or so I thought ? Is that right?  Is that an option?  If so, I do recommend that too.

 

How is your mom doing?

 

Marie

[[ho...]]

Mary and Marie thank you for your input I really appreciate all of you.

 

You’re welcome

 

Have a great weekend 

[[ho...]]

BB’s

 

I don’t know the specific name of the gene testing for the metabolism sorry.  And I don’t know if “skinny” has anything to do with it or not.

 

I take V, and only dose once a day at night and even with a fast metabolism with all drug’s, it doesn’t seem to be a problem.

 

Before I knew about this, I had some procedures done and things didn’t make sense.  Once I was having oral surgery.  I had to have sedation. The doctor gives me pill. 30 min later comes in and I am reading a magazine.  He say’s, “ Are you sleepy at all”? I say, “ No”.  So he gives me another one.  Again, about 15 min later he comes in, and I am wide awake, reading.....He repeats the question....I say NO.  He says, “ There is a 200 lbs man in the next chair over that I gave one of these to and he is out”....I shrugged.  He said, he could only give me one more, and if it didn’t work with in the next 30min, I would have to reschedule and they would have to put me under.  So finally the 3rd pill worked with some gas.  Then I had a tubal pregnancy and back then they cut you wide open....when I woke up, I was in HORRIBLE pain, and telling them I needed pain medicine.  The nurse said, I just came from recovery and they gave me pain medication, and I am saying....well I don’t know what to say, but it isn’t’ working.....I started to scream the pain was so bad.  So they gave me more.  Finally I got some relief, but they had to give me pain medication more often.  So this has happened to me the few times since I have had operations....pain med’s wear off, super fast.  It was a anesthesiologist who brought this to my attention about the red head gene.  It is quite fascinating, but can also be terrifying when you are in extreme pain and can’t get relief  :tickedoff:

 

Hope everyone is having a good weekend.  I am going to take it slow today.  I already sat out in the sun to get some vitamin D.....but I cleaned all day yesterday and went to my son’s football game ( he is sidelined/shoulder injury  ) so I am tired today.  Great day to take it easy.

[[Be...]]

I talked with my doc today and told her that I wanted to try a long hold.  She was very agreeable to that idea she told me that she blames herself for the mess I'm in and I didn't disagree.  She also wanted me to think about seeing a psychiatrist that does genetic testing to see how a person's metabolism responds to certain medications.  Has anyone dealt with anything like this?  I don't want to be practiced on with other meds or should I just continue to try a long hold.  Any input appreciated.

 

 

I had this test, when I was still going to a pain management clinic. It's a cheek swab, mine was done by a nurse sent by Medicare, they were asking for Medicare patients to participate, and there would be no charge as it was for a pilot study. I also have had my genotype done, and uploaded my file to Promothease, and searched for "fast metabolizer" and came up as normal. If you'd ever use 23 and Me or any other genetic geneology testing site, you can simply upload your file at Promothease and search like I did. It will tell you if you have the fast metabolizer gene(s) or if you are normal. My tests and genotype only mentioned one medication I should avoid, Clopidogrel, because I have Von Willibrand Disease Type 1 (Which is quite common in Europeans with Type O blood).

[[ho...]]

Benzolottie - Thank you....you are alway a great resource 

 

Marie

[[Di...]]

I talked with my doc today and told her that I wanted to try a long hold.  She was very agreeable to that idea she told me that she blames herself for the mess I'm in and I didn't disagree.  She also wanted me to think about seeing a psychiatrist that does genetic testing to see how a person's metabolism responds to certain medications.  Has anyone dealt with anything like this?  I don't want to be practiced on with other meds or should I just continue to try a long hold.  Any input appreciated.

 

 

I had this test, when I was still going to a pain management clinic. It's a cheek swab, mine was done by a nurse sent by Medicare, they were asking for Medicare patients to participate, and there would be no charge as it was for a pilot study. I also have had my genotype done, and uploaded my file to Promothease, and searched for "fast metabolizer" and came up as normal. If you'd ever use 23 and Me or any other genetic geneology testing site, you can simply upload your file at Promothease and search like I did. It will tell you if you have the fast metabolizer gene(s) or if you are normal. My tests and genotype only mentioned one medication I should avoid, Clopidogrel, because I have Von Willibrand Disease Type 1 (Which is quite common in Europeans with Type O blood).

 

Thank you Benzolottie for all of the info!

[[tr...]]

Hi ladies,

 

The team has been discussing this board and the nature of some of the discussion that occurs. I have to address the nature of some of the posts.

We can be supportive and validating of each others experiences, of how bad hormonal changes can affect symptoms in recovery etc, but we need to be careful about discussion of interventions used.

 

Site guidelines state:

"Please adopt a non-prescriptive writing style. Relating your experiences, stating options, or posting suggestions of what other members might do are all welcome. However, advising members of what they should or must do is against the ethos of the BenzoBuddies Community. Nor should you attempt to 'diagnose' medical problems or suggest medical treatments to other members. This policy also applies to members with medical qualifications. A more detailed explanation of this policy can be found in our Guidelines Regarding the Giving of Medical Advice document."

 

Treatments and interventions are best discussed on the support boards of "general health and wellness" http://www.benzobuddies.org/forum/index.php?board=59.0and "other medications", http://www.benzobuddies.org/forum/index.php?board=60.0, where a larger group of ppl can weigh in on their experiences and therefore ppl can make more informed choices.

 

Thank you for understanding. I realize many are in the heat of misery and are desperate for any answer to alleviate what feels like torture.

In the decades that benzos have been around, and the 10 + years BB has been around, ppl have tried a million things to try and bring relief. But in the end, what mostly and truly serves us  - is surrendering to the healing process and allowing our bodies the time it needs to reconstruct and heal.

 

May your periods be light and your symptoms mild..

 

 

 

[Guest [fl...]]

Trina, I am guessing this is directed at me - please feel free to PM me with specific problems with my posts - no need to direct it at everyone.

 

Sorry to mention Siberian rhubarb - just thought it might help someone. In no way do I recommend that you do it - just an option.

 

Sorry to mention that studies have show that SSRIs treat PMDD - this is just a medical fact and I was reflecting on the option (and mentioned it might not work.)

 

Sorry to mention tianeptine - I saw a study on it and thought it interesting. Thought it might help someone.

 

Sorry to mention progesterone - it has been a topic of discussion here.

 

In any case - posting these things in a medications area would have been an option, but unlikely relevant or to reach others.

 

I don't really care anymore. I realize that my opinions go against the grain here of "do nothing, only time helps."

 

I will try to keep things to myself from now on, and I apologize for offending anyone including Trina. Sometimes misinformation about medical topics unhelpful (e.g. magnesium is a "benzo", progesterone is a "benzo", etc), but maybe no one wants to hear it because they have already decided what they feel is the truth.

 

Best of luck to you all, and thanks for the support when I needed it. I'll just let time pass - sorry for breaking the rules here.

[[tr...]]

This was a reminder to all members, and I am not personally offended bc this is about BB policy and not anything to do with me personally.

 

 

[[St...]]

Morning LHSG hoping everyone has a better day.

Thank you Olive,Suzy and everyone who wished me well.l am so happy to be over the first hurdle and so far l am ok can't complain.l just take it a day at a time and so far so good.l know what has eased my transition has been keeping everything slow and steady and as much as long holds never appeared to help as much as l would have liked l knew this is when l would reap the benefits and l am happy to say l was right.love you.X

  Morning Twiny yes l am off thank God 🙏. Have to say l can't promise to stay too much longer however l know you will get there.l have trained you well and you can do this.I have been on this site for four years and l think it's nearly time l spread my wings.Not yet ofcourse so don't worry l will be here for a while.

How is your son?ls he still drinking?l hope he isn't and things have settled down on that front.Glad you got the vaccine you will soon be running out and about with your mask on and social distancing ofcourse.

I am ok the wrist is coming along nicely and probably in about 2 or 3 weeks l will go back to work.Still in lockdown with no end in sight getting a bit bored with it all l have to say.

You can't get into Ireland because of covid so never you bother yourself twiny 😂🤔😜.As for the drones l still wear my tinfoil hat so you will be wasting your time.Now you enjoy your day and give my boys a hug from me.love you my lST X

[[va...]]

Congratulations Stut!!!!

 

I'm never writing because I live in a lot of pain with cervical stenosis, lumbar disc degeneration, herniated disc, frozen shoulder and lupus. It seems like my body's decided to fall to pieces. Neurosurgeon says he won't operate until the spinal cord is affected and in the meantime I have to "live" like this and he suggested pain management unit. I'm more scared of the injections in my spine than of surgery itself. I've been in pain since I was thirty but this is something else. Managed to cut to 1.90. Take care Stutt. Wishing you an awesome drug free life. Sorry for the rant. Glad your wrist is healing.

[[Ca...]]

Lottie, thank you for the info.

 

Marie i just look more your signature and you seems to have gone pretty fast and the big honing of your taper ! Not following the small percentage reductions ?

 

Regarding my hold... I don’t know what to think because I still have a bad nights. Bad nights because anxiety going through my vains and hyper arousal even if I’m tired...so I’m like half asleep. And then it continues the next day with this anxiety I feel into my veins...I hate that, I despair that it will improve and I will be back to almost symptoms free holding... 

 

I was thinking to try the switch for the long half life when I’m stable because I need to catch my breath.

 

Everyday I’m thinking « I can’t do this » :'(

 

Do you think it helps ? I see a lot of people taking that on the forum...i have an appointment with a new psychiatrist tonight hope he will be helpful.

 

My mom is ok , she s tired because of the surgery . I hope she will get better soon

 

<3

 

 

[[Tr...]]

Hope this helps those that need it. Just uploaded, fresh off the press.

 

[[ho...]]

Lottie, thank you for the info.

 

Marie i just look more your signature and you seems to have gone pretty fast and the big honing of your taper ! Not following the small percentage reductions ?

 

Regarding my hold... I don’t know what to think because I still have a bad nights. Bad nights because anxiety going through my vains and hyper arousal even if I’m tired...so I’m like half asleep. And then it continues the next day with this anxiety I feel into my veins...I hate that, I despair that it will improve and I will be back to almost symptoms free holding... 

 

I was thinking to try the switch for the long half life when I’m stable because I need to catch my breath.

 

Everyday I’m thinking « I can’t do this » :'(

 

Do you think it helps ? I see a lot of people taking that on the forum...i have an appointment with a new psychiatrist tonight hope he will be helpful.

 

My mom is ok , she s tired because of the surgery . I hope she will get better soon

 

<3

 

Hi-

 

I think my C/O really messed me up and then I just kept going with the ~10% and less cuts per the Ashton Manual and I didn’t “hold”, and stabilize, so I just got worse and worse.  When I really crashed (or just continued crashing and had that same feeling...I just “ can’t” keep doing this) at 10 mg and finally held, I finally stabilized.  As I continued with the new plan and the liquid V and DLMT, I was/am going forward with “symptom based” taper, and whatever % that works out to be. It just so happens, the last 15 days, I was able to drop down 1mg at 10% with very little symptoms.  The first .5mg, I did begin to feel....so I slowed down and just held my doses, and then would proceed slowly.  The last .5mg, I had really no symptoms.  Just today I have had a little “vibrating”....so I held last night ( I had already planned on that) because I had hit 9mg on the 28th, that’s 1.90ml liquid (my compound formula).  So I can just hold as I need to, and move forward when I feel like I can.  If I can do 10% every 2 weeks, I will, and if I can’t I won’t....maybe I will end up somewhere like 7%.  Also, maybe as the mg get lower, the % may have to get lower.  I have read that happens too.  So who knows.  But for right now....this last two weeks, I handled the 10% really well.  I think those 1 mg ~ 10% cuts at one time, were just really hard on my system. Just too fast for me, too mush of a shock.

 

I do think the longer half life benzo’s are much better for the weaning process because it stays in your blood stream longer.  And if for some reason you do metabolize the medication faster, the shorter acting benzo’s would make it that much harder.  I have read others who have crossed over to Valium saying it gave them a sedating effect (almost too much, and others saying it eventually gets better) but that didn’t really happen to me, but maybe for you that would happen and would be a good thing.  If you do decide to crossover, please follow the Ashton protocol.

 

I really am sorry you are struggling so much, and I hope that you can begin to stabilize soon. 

 

Marie

 

 

[[Au...]]

Hi All,

Help or advice much appreciated.

I’ve been off Valium 5mg on Friday it will be 3 weeks. I’m still taking Ativan 2.5mg a day, 1.5mg am 0.5mg 1.30pm 0.5mg 9.30pm. The Valium was a result of a failed crossover, felt worse on Valium.

 

I’m in a bad way. Non-functioning. I’m have severe Akathesia, panic, agroaphobia, nausea, can’t eat, insomnia, body jerks, tremors, housebound. I tapered Valium in approx 6 weeks, quick taper but thought I’d be ok because I’m still on Ativan.

 

I know everyone is different but just curious to know how long people held before seeing improvement in symptoms when they tapered too quickly.

 

Ativan is offering no relief!

 

Benydryl has been suggested to help with Akathesia but I’m so scared to try anything now. I’m desperate, 24/7 symptoms. Please tell me things improve with time.

 

I’ve learnt my lesson and will do DMT/symptom based too using scales when I stablise.

 

Please let me stablise soon!!! I feel like I’m getting worse each day..  losing hope....

 

 

[[ho...]]

Hi All,

Help or advice much appreciated.

I’ve been off Valium 5mg on Friday it will be 3 weeks. I’m still taking Ativan 2.5mg a day, 1.5mg am 0.5mg 1.30pm 0.5mg 9.30pm. The Valium was a result of a failed crossover, felt worse on Valium.

 

I’m in a bad way. Non-functioning. I’m have severe Akathesia, panic, agroaphobia, nausea, can’t eat, insomnia, body jerks, tremors, housebound. I tapered Valium in approx 6 weeks, quick taper but thought I’d be ok because I’m still on Ativan.

 

I know everyone is different but just curious to know how long people held before seeing improvement in symptoms when they tapered too quickly.

 

Ativan is offering no relief!

 

Benydryl has been suggested to help with Akathesia but I’m so scared to try anything now. I’m desperate, 24/7 symptoms. Please tell me things improve with time.

 

I’ve learnt my lesson and will do DMT/symptom based too using scales when I stablise.

 

Please let me stablise soon!!! I feel like I’m getting worse each day..  losing hope....

 

HI- I am so sorry you are in such pain right now.  My doctor and I were talking about this and because of the half life of V and everyone is so different and their metabolism’s, it can take a full two weeks for V to leave the system.  I think I have read other places that it can be even longer. My doctor said 2 weeks for the half lives.  So that would only put you one week out, if your body took the whole two weeks to metabolize it out. 

 

You also mentioned you did a fast wean off of it, so that probably isn’t helping your situation either.  Hopefully any day now you will start to see some improvements. 

 

What was the problem with the Valium for you?  Have you thought about Klonopin as it has a longer half life too and it is different than Valium.  I have taken both.  I don’t know what to say about the Benadryl, I can’t take it...it does the opposite to me and makes me wired. 

 

Marie

[[Au...]]

Thank you for the reply Marie.

I definitely felt worse the second week off so that makes sense. My symptoms don’t feel like they are improving at all. I hope you are right and things settle soon as the Valium leaves my body.

 

As soon as I started the Valium I noticed an increase in panic and didn’t get any relief, I thought it was just me getting use to the new drug. I was more functional back then. Within a couple of days my dr & I decided to increase Valium to 5mg to help with increased HR. As time went on I became more panicked, and other symptoms developed. I ignored these and decided to reduce my Ativan dose by 1/4 tablet and CRASHED!. After over a month of holding I only got worse so I did two things. Spilt my dose of Ativan from twice a day to three (not gradually) and started tapering Valium after being on this for 3 months. I tapered 5mg over 6 weeks. I was already feeling horrible and was hysterical, crying 24/7 and suicidal. Since tapering the Akathesia has increased so much it’s unbearable.

 

I feel tortured 24/7. I can’t focus on anything to distract myself. The movement is so distressing. I use cold packs all over my body which sometimes helps.

 

I tried K once and it gave me 0 relief. My dr said some people don’t get relief from Valium and he thinks I’ve had a paradoxical reaction to it.

My Dr is great but he is guided by me... he’s happy to dispense Ativan for as long as it takes and thinks DMT is a great idea, thank BB.

 

You had a bad cross over to Valium but now you seem to be doing well. How long did you hold for before you improved?

I’m really glad the DMT is working for you...

Thank you for replying so quickly, I’m a mess!

 

 

 

[[ho...]]

Thank you for the reply Marie.

I definitely felt worse the second week off so that makes sense. My symptoms don’t feel like they are improving at all. I hope you are right and things settle soon as the Valium leaves my body.

 

As soon as I started the Valium I noticed an increase in panic and didn’t get any relief, I thought it was just me getting use to the new drug. I was more functional back then. Within a couple of days my dr & I decided to increase Valium to 5mg to help with increased HR. As time went on I became more panicked, and other symptoms developed. I ignored these and decided to reduce my Ativan dose by 1/4 tablet and CRASHED!. After over a month of holding I only got worse so I did two things. Spilt my dose of Ativan from twice a day to three (not gradually) and started tapering Valium after being on this for 3 months. I tapered 5mg over 6 weeks. I was already feeling horrible and was hysterical, crying 24/7 and suicidal. Since tapering the Akathesia has increased so much it’s unbearable.

 

I feel tortured 24/7. I can’t focus on anything to distract myself. The movement is so distressing. I use cold packs all over my body which sometimes helps.

 

I tried K once and it gave me 0 relief. My dr said some people don’t get relief from Valium and he thinks I’ve had a paradoxical reaction to it.

My Dr is great but he is guided by me... he’s happy to dispense Ativan for as long as it takes and thinks DMT is a great idea, thank BB.

 

You had a bad cross over to Valium but now you seem to be doing well. How long did you hold for before you improved?

I’m really glad the DMT is working for you...

Thank you for replying so quickly, I’m a mess!

 

You’re welcome....anytime

 

Thank you for sharing that information.  It is so strange how our bodies can react to different benzo’s. And it’s too bad you had this experience.  You really did go fast after being on it for quite a while.  Did you increase your Ativan to compensate for the reduction in Valium to help stabilize you?  DMT is definitely the way to go in my book now! I am a huge fan...it has changed my life.  I am a different person. 

 

Your poor body is just trying to recover from the rapid w/d from the V and on top of that, you weren’t doing well on it....so it’s just trying to heal...Do you listen to any type of meditation guided relaxation video’s?  Or meditation music? Do you do breathing exercises?  These things all helped me a lot.

 

Klonopin isn’t like “instant” relief, like shorter acting benzo’s or even V.....(Maybe at high doses, I don’t know, I never took high high doses) it takes time to build up.  You don’t really “ feel “ it, but it does work...and you do feel it if it isn’t there.  I have taken Zanax, and Ativan and those I felt with in 30 minutes or so.  When I was switched over to Klonopin for my original wean, I never “felt” it....I just felt even ....So that would be the same situation where you would need to c/o to K.....all hypothetical of coarse.  Once you stabilize and do a DMT with the Ativan, you may be just fine with that.  I see plenty of people on here who have weaned off shorter acting benzo’s 

 

My c/o from K to V was a problem because I went to fast.  So yes, I guess I did have a problem with the Valium so to speak....K an V while both benzo’s have different molecular structures. I was just so SICK, massive benzo flu with migraines.  I felt like I was dying.  My body did adjust, and then the Valium was fine.  I had taken Valium before in my lifetime, for short periods of time....like after a surgery and for an arm injury, but only for a few days.  I never had a problem with it physically before.

 

Marie

[[Sh...]]

Holy uteruses Batman Aunty Flo is in a bad mood this month. Oh Lordy 

 

Shayna - you crack me up and put a smile on my face!!

:laugh:

 

Flo will have been difficult as you were tapering, is my guess!

 

Winnie

 

Naw good Winnie x I’m glad it gave a a giggle x

 

Winnie I didn’t recognize u! U look so different (ur avatar)