The Long Hold Support Group

[[Ca...]]

Hey Guys... Had a big week and a bit erk in the guts, so just kinda lurking...

 

Heath, Insomnia for me is a constant, -but not at full strength... I have found a pattern that sorta works for me... After my big cuts it was too much... (nil night sleep)

I sleep well with daylight and day fatigue... So im not the best example, unless you like super casual, go with the flow...  I roughly get varying depth of sleep from 2am to 2pm... 

But also its abdomin cramps that keeps me in bed too... -just relaxing..

 

 

 

[[...]]

Hope all my friends who are struggling will have much better day tomorrow.

 

Hey MiYu....and good news lately? Windows?  You are one of the people who are at the top of my list of  buddies that I feel so badly for. Hope magic is around the corner for you all!

 

Heath

 

Thanks dear Heath 

No change really , still very symptomatic.... Keep hoping things will improve so I can feel hopeful about recovery .... Hard when you don't get a break .

just waiting and coping as best I can .

 

It's sooo hot here now too and can't go outside , and smoke from fires is making the air hard to breath .... Just added stuff that does t help my mood much!

 

I hope you find some sleep soon ..... You are so close to being done !

Love, MiYu  :smitten:

[[...]]

I've been too afraid to get a massage. Of course part of it is making an appointment and not being sure if I'll be able to go or not because of the agoraphobia.

 

I had a chiropractic appointment this past Saturday. My husband took me to it. I was super anxious and agoraphobic but I went anyway. Having my hubby there really made a difference. It has been a couple of weeks since I had been adjusted and she also did some deep tissue probing. I ended up with a massive migraine and today is the first day I've really been able to function. I've also been having problems with increased anxiety in the evenings which is unusal for me. I'm wondering if it was caused by the adjustment. She knows I'm in withdrawal but I asked her to really do a in depth exam and see if she could help me get my pelvis to straighten out so it was a little more intense than usual. She was concerned it might make my symptoms worse but wants to see me again on Wed so we can discuss things. She doesn't want to move to fast and trigger more w/d sxs for me. She's really great when it comes to being understanding with all of this stuff.

 

I really wish I could get back to where I was before the change in generics. It seems to be taking forever to recover and I even did a month long taper over to the new generic. I can't imagine how bad things would have been if I hadn't done that. It's hard to know how long to expect it to take when I don't know how much of a change it was to my dose. Sigh.

 

I'm so glad Steveozz is doing so well. I hope he continues to heal quickly 

 

Hugs and healing everyone 

T

 

So sorry you are still having a hard time since the generic switch . .. It's crazy how sensitive we can be to these changes .

 

I hope you feel better soon . 

 

I'm having a weird time with the Valium since I made that small cut in June . Altho I'm some ways I'm better , I am not finding the Valium SO sedating it's crazy

1/2 mg in the day knocks me out ! So I'm having to take the majority of my dose at night . I don't understand the change , it's never done this before , and I've always dosed three X day as apparantly I'm a rapid metabolizer . Perhaps  that's changed? Very strange .....I actually feel a lot better in the day taking less now , but my nervous system is still super fragile since the cut , so I cant continue my taper yet . 

 

All a bit  scary but trying not to worry too much .

Well get there T ,

Love, MiYu 

 

Thanks MiYu,

 

I'm so sorry you are still struggling with the tiny cut you made. It really is confusing why sometimes we can make cuts and recover in a few weeks and then other times it takes us months. I hope that as you continue to hold you will start to feel better. You are in my thoughts. 

 

T

 

Thanks T  I hope you get stable soon .........

It does seem to be taking months for me to get anything close to stable ....not there yet.

Now that I've moved most of my dose to night I don't seem to get quite as sedated with the small dose of V in the day .....that's something! But being housebound is getting a bit depressing 

 

Keep holding on .

Love MiYu 

[[...]]

Well I was feeling quite well for a number of weeks but now I am in a wave. Mostly IBS stuff. 

 

I have been sleeping ok and other than the IBS stuff which makes me feel weak and tired I guess Im not too bad.

 

Hope everyone else who is well stays well and those who are ill get better fast! 

 

ATU 🙏🏻

 

Sorry things are rough right now ATU .....I  Hope you feel better soon.

MiYu 

[[fr...]]

  HI MiYu,  Just sending you a  to let you know I am right there with you.  Hanging on and just reading. So appreciate all the positive posts here and everyone helping us along.  Bless you and bless all here for your compassion. 

[[...]]

  HI MiYu,  Just sending you a  to let you know I am right there with you.  Hanging on and just reading. So appreciate all the positive posts here and everyone helping us along.  Bless you and bless all here for your compassion. 

 

Thank Free , here's a hug for you too 

 

I hope we both reach a stable place to taper from very soon . It's good to know I'm not the only turtle turtle , even tho I'm so sorry we are both suffering so much .

MiYu 

[[fr...]]

  Yes, sure hope so.  Holding is hard work also. 

[[Ca...]]

You guys are the bestest turtles... with the bestest attitudes..!!

Your Days will come...

 

[[sl...]]

Hope all my friends who are struggling will have much better day tomorrow.

 

Hey MiYu....and good news lately? Windows?  You are one of the people who are at the top of my list of  buddies that I feel so badly for. Hope magic is around the corner for you all!

 

Heath

 

Thanks dear Heath 

No change really , still very symptomatic.... Keep hoping things will improve so I can feel hopeful about recovery .... Hard when you don't get a break .

just waiting and coping as best I can .

 

It's sooo hot here now too and can't go outside , and smoke from fires is making the air hard to breath .... Just added stuff that does t help my mood much!

 

I hope you find some sleep soon ..... You are so close to being done !

Love, MiYu  :smitten:

Oh MiYu my dear Buddie  :hug:

I so wish you could get a break from this soon.

It is so miserable for you, and Heath and Freeme as well.

I wish I could think of some practical help for you.

You are bearing it so patiently

Just to say that I'm thinking of you and trying to send good healing thoughts to you

Hang in there.

Can't is right - your day will come when you suddenly feel well again.

Praying that it comes soon.

Love to everyone having problems 

 

[[sl...]]

Just got finshed reading some posts on the insomnia support group.

Insomnia is my biggest problem for the past two weeks.

 

Got  some good ideas, but overall, it's kind of a scary place .i don't think I'll return to that group..  Tooo scary for me. Just saying....

 

SOOOOOO......

I guess I'll just have to get some insomnia help ideas elsewhere. Anybody have advice?

I've got Remeron, but do not want to take it.

 

Question.....is insomnia a reason to stop or Slow a taper?

 

Heath

Heath I have had insomnia since childhood.

Earliest I can remember is at 7 years old - coming downstairs in tears to tell my parents that I couldn't go to sleep.

I just have a problem switching my brain off, but my Dad had it too so he was always patient and understanding.

Even I find that insomnia group on BB scary though.

What Can't said struck a chord because that is exactly what my brother does too - sleeps as and when, usually during the day.

He is insomniac too.

I have (kind of) learned to cope with it, although I hate it, by almost self hypnotising.

I tell myself that it doesn't matter if I don't sleep because I WILL cope the next day and that eventually, one night I will have a proper night's sleep.

When I really convince myself that it doesn't matter I have the best chance of just dropping off.

I know that sounds silly and it was damned difficult to convince myself I would cope the next day when I had twin babies plus a 3 year old.

Not so hard now because nobody depends on me to cope.

I could never dare take anything to make me sleep when they were babies so I've just mostly managed without.

Recently I've taken what Valley recommended - Doxylamine succinate - just twice, when I've been stressed while travelling, and they did work extremely well.

If you only take them occasionally they could maybe help you?

You are almost through with your taper & with luck your sleep pattern will right itself.

Wish I could suggest something more certain but the Doxylamine could work short term for you 

[[He...]]

Hey Guys... Had a big week and a bit erk in the guts, so just kinda lurking...

 

Heath, Insomnia for me is a constant, -but not at full strength... I have found a pattern that sorta works for me... After my big cuts it was too much... (nil night sleep)

I sleep well with daylight and day fatigue... So im not the best example, unless you like super casual, go with the flow...  I roughly get varying depth of sleep from 2am to 2pm... 

But also its abdomin cramps that keeps me in bed too... -just relaxing..

 

Hello insomniac's!

 

And Hi Cantfly,

 

 

Can't fly....sorry you are having insomnia troubles too.. sorry for all insomniacs..it's the pits!

 

I read onthe insomnia board that if you go right out into the sunlight as soon as you wake up and stay there for 20 minutes, it will help to reset your time clock. I'm going to give it a try.

I'll try anything that sounds feasible. I already do shut down a my techie  stuff an hour before I try to go to sleep ( well maybe I cheat in that area ?... I guess I better stop that cheating!)

 

My sleep isn't that bad except I can't seem to get to sleep till about 2:00 a.m.  That's because I got used to staying up late because my hubby stays up very late..He is  retired so it doesnt matter. But I just started a job and have to get up at 6:00 in order to get to work on time. So going to bed at 2:00 a.m. And getting up at 6:00 a.m. just isn't going to work! Melatonin doesn't work too well however I'm sill taking that because it used to help to get me to fall asleep. DONT WANT to take my Remeon unless it's an absolute must. I want to fix this naturally if possible. I am think this bout of insomnia also has to so with my taper.  So far , I know, it's...grin and bear it.

 

Well, Let ya know what happens! Other advice......certainly welcome!

 

Heath 

[[sl...]]

Oh yes the sunlight thing does work.

I forgot.

I bought myself a sunlight alarm clock.

Instead of a buzzer it wakes you by slowly and gradually producing "sunlight"

It does work, it improved my sleep pattern.

Forgot about it because it's at home.

It's called a Lumie Body Clock.

Was recommended by my psych doc.

Bought it from Amazon.

If we relied on actual sunlight here in the UK we would be ina mess  but the clock is lovely and it does work

 

[[st...]]

Day 12 benzo free,  A huge red flag went up yesterday for me. I am like everyone else who is on this hell ride...trying to understand how to get off...yesterday my wife and I made a big connection after I had an EGD done for my stomach to find out for certain I am battling gerd/esophogitis  as my regular doctor thinks. In fact she didnt think the EGD was necessary since all my symptoms were classic gerd.  Well she was dead wrong and now she is fired... Gastro doc gave me a clean bill of health...my stomach is in great shape..no irritation..my duodenum is good..LES working fine..and  my esophagus showed no signs of acid reflux.  As it turns out it was all the gerd meds...Prilosec and zantac that were actually giving me added anxiety leading to stomach discomfort...just take a look at this link and see how many people have similar symptoms to benzo withdrawals..

http://www.askapatient.com/viewrating.asp?drug=19810&name=PRILOSEC

 

Now I am not claiming prilosec is making everyone sick...but in my case it was. After jumping off for 2 days my stomach was killing me/typical withdrawal symptom... so doctor said gerd...take 40mg prilosec...but each day my head pressure got worse..stomach got worse...dizzy..lost appetite..insomnia..back on the couch...I felt like I was back in complete benzo withdrawals and was losing my mind...

 

I stopped the zantac and prilosec 2 days ago and have already felt improvement...then it occured to me that the first round of prilosec was what sent me to the docotor in the first palce....I had taken it for 5 days and each day I was falling apart...the 5th day I was having wild dreams like a bad acid trip....I just never connected the dots from first prilosec dose to this last round... It appears now that the prilosec may have been the very thing that started this benzo hell ride....

 

Thank God for the internet... if I was at the mercy of these drug pushing doctors I would be taking Zoloft now on top of everything else they have thrown at me... I was so vulnerable and weak that I actually went to a shrink to get any kind of info to explain what was going on...and all he could do was offer another drug/Zoloft.... I tore up the script in the parking lot with what little strength I had left... thank you all my Benzobuddies! 

[[Se...]]

So many people get caught up on the drug train. One drug leads to another to another, and then another to counteract a symptoms from a previous one.

 

You are so fortunate you made that connection so fast. Very happy for you.

[[st...]]

So many people get caught up on the drug train. One drug leads to another to another, and then another to counteract a symptoms from a previous one.

 

You are so fortunate you made that connection so fast. Very happy for you.

 

Back in the day before the internet you were at the mercy of a doctors "opinion"... today they treat you like cattle...spend 5 mins with you and rush you out the back door... Next!...  either way you are screwed if you don't take the time to understand and keep digging for info... so glad I found benzobuddies...!

[[...]]

Thanks Cant and Slowly ..... Sure feels like this will never end! I made the mistake of taking an extra 1/2 mg of my dose at lunch today as I was feeling anxious, knocked me out for 3 hours! Crazy .....

Then I thought about what I might have done that made me feel so anxious ..... Not sure if this was it but I remember ATU mentioning it , I took a bit of B 12 this morning .... Could that have been the culprit ? Making me anxious and maybe speeding up the V metabolism even more than it usually seems to go these days . Won't be taking that again .....

 

 

Love. MiYu 

[[Le...]]

Thanks Cant and Slowly ..... Sure feels like this will never end! I made the mistake of taking an extra 1/2 mg of my dose at lunch today as I was feeling anxious, knocked me out for 3 hours! Crazy .....

Then I thought about what I might have done that made me feel so anxious ..... Not sure if this was it but I remember ATU mentioning it , I took a bit of B 12 this morning .... Could that have been the culprit ? Making me anxious and maybe speeding up the V metabolism even more than it usually seems to go these days . Won't be taking that again .....

 

Love. MiYu 

Hi Miyu,

 

I don't think the B12 speeds up metabolism of V...but I could be wrong.  The more likely answer is the B12 itself caused the anxiety. I've seen enough posts on the forum about B vitamins either causing anxiety or increasing sxs that I won't take it in supplement form. I have "tinkered" with a number of supplements during my taper, but I won't go near B12. Another thought comes to mind...any foods or supplements that help detox/cleanse the liver may effect the way you metabolize V... I think especially so since you're already an ultrarapid metabolizer. I could be completely wrong...we are all unique, what works for one is a catastrophe for another. These thoughts popped into my mind as I read and i wanted to share them before my brain goes back into  mode.

 

Healing thoughts, Left 

[[...]]

Thanks Cant and Slowly ..... Sure feels like this will never end! I made the mistake of taking an extra 1/2 mg of my dose at lunch today as I was feeling anxious, knocked me out for 3 hours! Crazy .....

Then I thought about what I might have done that made me feel so anxious ..... Not sure if this was it but I remember ATU mentioning it , I took a bit of B 12 this morning .... Could that have been the culprit ? Making me anxious and maybe speeding up the V metabolism even more than it usually seems to go these days . Won't be taking that again .....

 

Love. MiYu 

Hi Miyu,

 

I don't think the B12 speeds up metabolism of V...but I could be wrong.  The more likely answer is the B12 itself caused the anxiety. I've seen enough posts on the forum about B vitamins either causing anxiety or increasing sxs that I won't take it in supplement form. I have "tinkered" with a number of supplements during my taper, but I won't go near B12. Another thought comes to mind...any foods or supplements that help detox/cleanse the liver may effect the way you metabolize V... I think especially so since you're already an ultrarapid metabolizer. I could be completely wrong...we are all unique, what works for one is a catastrophe for another. These thoughts popped into my mind as I read and i wanted to share them before my brain goes back into  mode.

 

Healing thoughts, Left 

Thanks Left ....I think the B 12 did cause the anxiety . What's really bothering me is the sedation part with the Valium now ... It just worries me . I was out for three hours after taking 1/2 mg at lunch!

If I was 70 or 80 years old then maybe I'd think Valium was building up too much in my system , but im not ! Unless I'm just not eliminating the metabolites properly , especially as now my liver  hurts all the time.

I've yet to find anything about this , being a fast metabolizer and what happens with the actual metabolites in this case , do they get metabolized fast also ? Or is it just the parent drug ? In which case , it could cause a build up of metabolites where the body can't eliminate them fast enough ..... I don't know , I just know I'm really unwell and not doing great with Valium now ....

 

As you say we're all so different ... Anyway , I speak to my not so helpful doc next week and will see what he thinks . I'd like some answers if possible on how to proceed !

 

Hang in there Left ,

MiYu 

[[Se...]]

Was wondering if anyone has any thoughts on my current situation. I have been holding since May 30th.  At that point, I was in such bad shape I was not sure I could continue working. Since the hold, I had been doing better and better. The last month being very good at times.

 

Last week, the day after a massage, I started to go downhill and am finding myself about where I was at the end of May. Horrible nerve pain and anxiety. I'm just perplexed because in the past I could always relate feeling worse after a cut. But it is clearly not the case here.

 

Anybody have any thoughts or encouragement to send my way.     

 

 

Thanks 

 

Hi Serenitee,

 

I don't know if it is different or not but I did a CT from an AD and then I started tapering my benzo about six months later. I was doing ok not great at the time. When I did the CT I found that I was doing ok for about three months and then I went into pretty bad w/d's for awhile. I know that a lot of the symptoms from AD w/d and benzo w/d overlap so I wonder if the holding and feeling better and then feeling worse again can be similar as well. In any case I know that others have felt well for awhile and then gone back into w/d's even though they did not cut. I figure our brains have decided they need to work on another area for awhile and hopefully it won't take long and we'll be back to windows again.

 

Hoping you find a window really soon 

T

 

Thanks for the reply. I think you and V are right. These things just happen for whatever reason. Maybe the brain is rebuilding.

 

Interestingly, although my neck and arm is still killing me, the mental anguish I have been having the last week lifted pretty good today. So I got a much needed window.

 

Thanks again. Hope you have better days ahead. 

[[He...]]

Oh yes the sunlight thing does work.

I forgot.

I bought myself a sunlight alarm clock.

Instead of a buzzer it wakes you by slowly and gradually producing "sunlight"

It does work, it improved my sleep pattern.

Forgot about it because it's at home.

It's called a Lumie Body Clock.

Was recommended by my psych doc.

Bought it from Amazon.

If we relied on actual sunlight here in the UK we would be ina mess  but the clock is lovely and it does work

 

THANK YOU! SLOWLY IMPROVING! I WILL look into it.

And here I was going to pop out of bed and run out into the backyard to catch 20 minutes of sun first thing in the morning, even though I had little faith in the whole idea. Now I really do have faith in it.

 

I'll let you know what happens

Heath

[[sl...]]

Heath

LOL that sounds like me when I'm on my winter sun hols.

First thing I do after waking is go and sit in the sun on balcony or whatever. I sit for around half an hour just letting it soak in before I shower etc.

Interestingly I have  always slept brilliantly on hol but I used to put it down to being more relaxed, which is undoubtedly part of it, but since I got this clock last year it has definitely helped and I've enjoyed a much better sleep pattern even though the diazepam was messing it up a bit.

It's a lovely way to wake up and it gets rid of any "hungover" foggy feeling which you can get after a bad night.

I consider it a good investment.

[No I'm not on commission from Lumie  ]

[[Ki...]]

Thanks Cant and Slowly ..... Sure feels like this will never end! I made the mistake of taking an extra 1/2 mg of my dose at lunch today as I was feeling anxious, knocked me out for 3 hours! Crazy .....

Then I thought about what I might have done that made me feel so anxious ..... Not sure if this was it but I remember ATU mentioning it , I took a bit of B 12 this morning .... Could that have been the culprit ? Making me anxious and maybe speeding up the V metabolism even more than it usually seems to go these days . Won't be taking that again .....

 

 

Love. MiYu 

 

B12 can definitely speed you up. They dont put it in energy drinks for the health benefits lol! I was supposed to try to increase my b12 and folate levels to help lower my super high homocysteine ( bad stuff in blood that nicks up the surfaces of arteries) levels but I just cant do it now. B12 does a number on me. Hopefully my arteries can find some internal band aids until I get off these benzos and maybe by then I can do the b12. But MiYu my guess is thats not gonna do you any favors in your state- its probably best to stay way away from that till you feel better❤️

[[...]]

Thanks Cant and Slowly ..... Sure feels like this will never end! I made the mistake of taking an extra 1/2 mg of my dose at lunch today as I was feeling anxious, knocked me out for 3 hours! Crazy .....

Then I thought about what I might have done that made me feel so anxious ..... Not sure if this was it but I remember ATU mentioning it , I took a bit of B 12 this morning .... Could that have been the culprit ? Making me anxious and maybe speeding up the V metabolism even more than it usually seems to go these days . Won't be taking that again .....

 

 

Love. MiYu 

 

B12 can definitely speed you up. They dont put it in energy drinks for the health benefits lol! I was supposed to try to increase my b12 and folate levels to help lower my super high homocysteine ( bad stuff in blood that nicks up the surfaces of arteries) levels but I just cant do it now. B12 does a number on me. Hopefully my arteries can find some internal band aids until I get off these benzos and maybe by then I can do the b12. But MiYu my guess is thats not gonna do you any favors in your state- its probably best to stay way away from that till you feel better❤️

 

Thanks kitty , I'm pretty sure that's what did it yesterday .

Sounds like you have the same issues I do with the b12 folate and methylation . I need b12 and folate but for now food source is best . MiYu 

[[sl...]]

So many people get caught up on the drug train. One drug leads to another to another, and then another to counteract a symptoms from a previous one.

 

You are so fortunate you made that connection so fast. Very happy for you.

 

Back in the day before the internet you were at the mercy of a doctors "opinion"... today they treat you like cattle...spend 5 mins with you and rush you out the back door... Next!...  either way you are screwed if you don't take the time to understand and keep digging for info... so glad I found benzobuddies...!

 

That sounds just like my doctor, stevozz

They don't like you looking the drugs up online either do they!

Glad you are still doing so well 

[[ly...]]

So many people get caught up on the drug train. One drug leads to another to another, and then another to counteract a symptoms from a previous one.

 

You are so fortunate you made that connection so fast. Very happy for you.

 

Back in the day before the internet you were at the mercy of a doctors "opinion"... today they treat you like cattle...spend 5 mins with you and rush you out the back door... Next!...  either way you are screwed if you don't take the time to understand and keep digging for info... so glad I found benzobuddies...!

 

Wow, is this true.  The doctors not recognizing "side effects" and adding more meds which cause more side effects and the whole crazy nightmare just going on and on...until none of us can even think straight.  Such a waste of years...

 

The good thing is we know now and we are doing something to help ourselves.