The Long Hold Support Group

[[no...]]

Hey "Sista", sorry to hear you are not doing well right now, but I have faith, that the tide will turn for you again, how could any of us know what Benzo's could do to us, I believe that the Doctors did not tell us for fear, we would refuse to take the  pills. Please know I have you in my thoughts and yes Prayers too. :smitten:

Thank you Sista'  Much love back atcha' 

 

 

 

 

Love Nova xxx  :smitten:

[[Va...]]

I just wish I knew for sure if the pins be needles were a wdsx or something going on in my cervical spine. I guess I won't know till I'm off of this stuff.

Heath  Mine was so bad at one time I thought it was rheumatoid arthritis  developing as I have a full hip replacement due to osteo arthritis, and  for many  months I had to wear splints on my arms at bed time and quite often during the day, and I'd sometimes get numbness in my hand and arms as well. I was also diagnosed as having reynards disease as I had classic symptoms, it was that bad my arms and legs went from navy blue to black, I got pictures I took of it, and the pain was awful but it was ALL withdrawal.

 

It went away eventually but certain symptoms come an go for no obvious reason they just do because its withdrwal/healing going on, my symptoms mimic lots of different illnesses so do most people but its all withdrwal.  The last few days I feel like I have practically every physical and some mental illnesses known to man, and the physical stuff is agony, my Doctor diagnosed it as Fibromyagia and the hospital said it was M.E but its ALL definitely withdrwal.  I've  got or had a myriad of other symptoms as well, and some really bizzare stuff  all due to Benzos and withdrawal. 

 

 

 

Love Nova xxx  :smitten:

I had an MRI this summer as I was convinced I had a cervical herniated disc. I have never had pins and needles in my arms and hand and had been having it for several weeks. The buddies all told me it was withdrawal but I was convinced it was something more so I had the MRI which showed nothing and low and behold the pins and needles cleared up in a week. This is a bizarre journey where we experience an assault on our nerves, brains, muscles, adrenals, circulatory system, digestive system, etc.  It causes sxs that appear like so many other disorders and conditions that it's hard not to develop some health anxiety lol.  Right now I have the freezing cold symptom. I can't get warm!  --V

[[be...]]

I just wish I knew for sure if the pins be needles were a wdsx or something going on in my cervical spine. I guess I won't know till I'm off of this stuff.

Heath  Mine was so bad at one time I thought it was rheumatoid arthritis  developing as I have a full hip replacement due to osteo arthritis, and  for many  months I had to wear splints on my arms at bed time and quite often during the day, and I'd sometimes get numbness in my hand and arms as well. I was also diagnosed as having reynards disease as I had classic symptoms, it was that bad my arms and legs went from navy blue to black, I got pictures I took of it, and the pain was awful but it was ALL withdrawal.

 

It went away eventually but certain symptoms come an go for no obvious reason they just do because its withdrwal/healing going on, my symptoms mimic lots of different illnesses so do most people but its all withdrwal.  The last few days I feel like I have practically every physical and some mental illnesses known to man, and the physical stuff is agony, my Doctor diagnosed it as Fibromyagia and the hospital said it was M.E but its ALL definitely withdrwal.  I've  got or had a myriad of other symptoms as well, and some really bizzare stuff  all due to Benzos and withdrawal. 

 

 

 

Love Nova xxx  :smitten:

I had an MRI this summer as I was convinced I had a cervical herniated disc. I have never had pins and needles in my arms and hand and had been having it for several weeks. The buddies all told me it was withdrawal but I was convinced it was something more so I had the MRI which showed nothing and low and behold the pins and needles cleared up in a week. This is a bizarre journey where we experience an assault on our nerves, brains, muscles, adrenals, circulatory system, digestive system, etc.  It causes sxs that appear like so many other disorders and conditions that it's hard not to develop some health anxiety lol.  Right now I have the freezing cold symptom. I can't get warm!  --V

Pour down Hot Tea if you can, I know you teach and that could be sorta of a minor problem. . Thankfully I would think in my case, I have been through this before and know the sx, but of course I could be thrown a curve ball, but I tend not to worry much, I might have some kind of brain disease. , I have always been that way.

[[no...]]

I just wish I knew for sure if the pins be needles were a wdsx or something going on in my cervical spine. I guess I won't know till I'm off of this stuff.

Heath  Mine was so bad at one time I thought it was rheumatoid arthritis  developing as I have a full hip replacement due to osteo arthritis, and  for many  months I had to wear splints on my arms at bed time and quite often during the day, and I'd sometimes get numbness in my hand and arms as well. I was also diagnosed as having reynards disease as I had classic symptoms, it was that bad my arms and legs went from navy blue to black, I got pictures I took of it, and the pain was awful but it was ALL withdrawal.

 

It went away eventually but certain symptoms come an go for no obvious reason they just do because its withdrwal/healing going on, my symptoms mimic lots of different illnesses so do most people but its all withdrwal.  The last few days I feel like I have practically every physical and some mental illnesses known to man, and the physical stuff is agony, my Doctor diagnosed it as Fibromyagia and the hospital said it was M.E but its ALL definitely withdrwal.  I've  got or had a myriad of other symptoms as well, and some really bizzare stuff  all due to Benzos and withdrawal. 

 

 

 

Love Nova xxx  :smitten:

I had an MRI this summer as I was convinced I had a cervical herniated disc. I have never had pins and needles in my arms and hand and had been having it for several weeks. The buddies all told me it was withdrawal but I was convinced it was something more so I had the MRI which showed nothing and low and behold the pins and needles cleared up in a week. This is a bizarre journey where we experience an assault on our nerves, brains, muscles, adrenals, circulatory system, digestive system, etc.  It causes sxs that appear like so many other disorders and conditions that it's hard not to develop some health anxiety lol. Right now I have the freezing cold symptom. I can't get warm!  --V

Hi V,  I've also had that one all week , I had it a  quite few times the last 3 years, that's another come and go symptom but was also another reason reynards was misdiagnosed, and I have to wear gloves when handling cold stuff as that makes it painfully worse  :D I got this  electric throw on my bed and another I keep in my lounge, https://www.amazon.co.uk/gp/product/B001IRYFJG/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

 

Love Nova xxx  :smitten:

[[He...]]

Oh boy! Again you all make so much sense regarding the pins and needles.I wish I could get it through my thick skull that it really is just withdrawal and I really need to stop worrying and let it run its course, and that it will go away eventually just like the inner shakes and trembles I had for about 5 months..  I wish I could just relax and accept it. I am trying!

 

Sorry that you are suffering Nova. I hope you find relief soon...like now!

 

And V, I too had the freeze. couldnt  get warm even when it was 70 degrees. I was always wearing two sweaters, even in the house. Keep the sweaters handy and I hope it passes soon. Of course living in a deep freeze where you live doesn't  help matters, does it?  Best of luck. Heating pad helped me a little when I was able to "plug myself in"

 

Feel better everyone.

 

Heath

[[ly...]]

 

 

Heath,

 

I had pins and needles come on for the first time last Spring - 5wks into my hold.  It's mainly lower legs and feet but I have also had it in the outside fingers (with shooting pain as well).  I sometimes get numbing around my mouth.  All has gone away except the tingling in my lower legs and feet.  I think it will be around for quite a while.   Before my taper my GP told me that my awful joint pain was arthritis and my hair loss was male pattern baldness.  HA!  NOT!  Both went away after cutting the xanax.  My pdoc told me the pins and needles is due to some "medical" issue I must have.  HA!  These people know nothing!  And you are right, these symptoms could keep a hospital medical staff busy for months.  We'd all be diagnosed with all manner of things - and probably medicated, since that is what they do.

[[ba...]]

Well, buddies, here is my tale of woe. Changed my dosing to 3 times a day instead of 4, longer holds, same dose, just split 3 ways instead of 4. I actually am finding this better for me. Hold on, the woe is coming next, just an update there on the xanax.

 

I have been on seroquel for at least a year, doctor started me out at a night dose, then an early am dose. Even on the seroquel, I only sleep a few hours.

 

Here is my issue. the bedtime dose is fine, no problems. It's 15 mg. I have come to realize that the greatest benefit from this dose is actually anxiety reduction, not sleep so much.

 

The second dose (5 mg) drives me crazy. I am definitely hung over, groggy, and I feel like it makes the chest tightness worse (it does increase heart rate) That comes between 1 and 3 am, a few hours into dose 1 of seroquel, I wake up. That second dose is giving me massive side affects I can't deal with.

 

So I decided to try and cut it.  It's been about 2 weeks. I felt an amp as son as I reduced, and on day 9 it exploded. I started with skipping the am dose every other morning. Then I tried cutting my first dose to 10 mg, then taking the 5 mg am dose. That made me explode.

 

At first, I could put up with the amped anxiety as I wasn't getting the sero hangover, pain and disorientation. That was great to not go through every morning.

 

Last night went back to the 15 mg pm dose, took the 5 mg early am dose, and I hate this. First time in 2 weeks I have taken the full original dose.

 

It leaves me achy, groggy, my heart rate is too high, nasty side affects that last until early or mid afternoon. And, I still have the very amped up morning anxiety that began once I started trying to cut the am seroquel.

 

I did post in the seroquel group, it's not as active. Got some advice, but not satisfied.

 

During this period, my anxiety has been so escalated, I am really suffering. Especially in the morning. I accept it was the sero cut that probably did this, hence, went back to my old sero regimen, but I can't stand that am dose!!!

 

1. Has anyone else gotten a huge increase in anxiety and chest tightness while making a change, and how long did it last ?

2. I have got to dump that am dose somehow. Thinking every third day instead of every other as I was doing. There are no guidelines, other then 5% and hold from 1 person in the sero group. That wont work in this situation.  I really need to get rid of it, just don't know how, and can't get any sound advice. My docs advice was to stop taking the am dose, he said it shouldn't be a problem (righhhhhhhht)

 

Would appreciate input.

http://i1088.photobucket.com/albums/i333/baddove9/15400354_452238448280057_7161884839926475181_n.jpg

[[be...]]

Sorry baddove, do not know about the medication you are on.

Valley will be back I am sure, and others will chime in.

[[He...]]

Thanks Lynn,

like all the other buddies, you always make a lot of sense. I'm going to try to shut up about the pins and needles  from now on and just ride it through.  Don't want anyone saying.....there she goes again! Ok,  FINISHED !

 

Heath

[[Va...]]

Well, buddies, here is my tale of woe. Changed my dosing to 3 times a day instead of 4, longer holds, same dose, just split 3 ways instead of 4. I actually am finding this better for me. Hold on, the woe is coming next, just an update there on the xanax.

 

I have been on seroquel for at least a year, doctor started me out at a night dose, then an early am dose. Even on the seroquel, I only sleep a few hours.

 

Here is my issue. the bedtime dose is fine, no problems. It's 1.5 mg. I have come to realize that the greatest benefit from this dose is actually anxiety reduction, not sleep so much.

 

The second dose (5 mg) drives me crazy. I am definitely hung over, groggy, and I feel like it makes the chest tightness worse (it does increase heart rate) That comes between 1 and 3 am, a few hours into dose 1 of seroquel, I wake up. That second dose is giving me massive side affects I can't deal with.

 

So I decided to try and cut it.  It's been about 2 weeks. I felt an amp as son as I reduced, and on day 9 it exploded. I started with skipping the am dose every other morning. Then I tried cutting my first dose to 10 mg, then taking the 5 mg am dose. That made me explode.

 

At first, I could put up with the amped anxiety as I wasn't getting the sero hangover, pain and disorientation. That was great to not go through every morning.

 

Last night went back to the 15 mg pm dose, took the 5 mg early am dose, and I hate this. First time in 2 weeks I have taken the full original dose.

 

It leaves me achy, groggy, my heart rate is too high, nasty side affects that last until early or mid afternoon. And, I still have the very amped up morning anxiety that began once I started trying to cut the am seroquel.

 

I did post in the seroquel group, it's not as active. Got some advice, but not satisfied.

 

During this period, my anxiety has been so escalated, I am really suffering. Especially in the morning. I accept it was the sero cut that probably did this, hence, went back to my old sero regimen, but I can't stand that am dose!!!

 

1. Has anyone else gotten a huge increase in anxiety and chest tightness while making a change, and how long did it last ?

2. I have got to dump that am dose somehow. Thinking every third day instead of every other as I was doing. There are no guidelines, other then 5% and hold from 1 person in the sero group. That wont work in this situation.  I really need to get rid of it, just don't know how, and can't get any sound advice. My docs advice was to stop taking the am dose, he said it shouldn't be a problem (righhhhhhhht)

 

Would appreciate input.

http://i1088.photobucket.com/albums/i333/baddove9/15400354_452238448280057_7161884839926475181_n.jpg

HI BD. About the only advice I can give on Q is to send you to a thread on survivingantidepressants.org titled Tipe for tapering off seroquel. Seroquel has a big side effect profile so I'm sure it's adding to your sxs. I know others on this thread have struggled with it also.  --V

 

http://survivingantidepressants.org/index.php?/topic/1707-tips-for-tapering-off-seroquel-quetiapine/

[[ga...]]

Dove, I am currently on 19mg Seroquel for sleep. (Liquid titration and holding.) My original dose was 25mg, the smallest tablet I know of. Most people take 25-50mg for sleep. I find it works if I take it on an empty stomach and go through a routine of quieting before bed. I dim the lights and do restful things for about 1 1/2 hours before it kicks in. I get about 6 hours of sleep.

 

I don't see the sense of the early am dose. I am hung over the next morning from the night dose. I've never heard of dosing Q like this.

 

Also, do you really mean 1.5mg of Q at night, because that would do nothing for sleep. You must mean 15mg? That should work but is a bit on the low side for some people.

 

What I have heard recently is that if you are on Q for along time, it will not knock you out. You become habituated to it. It will only gently nudge you toward sleep. You need to practice good sleep hygiene (dimming the lights, staying away from screens or anything stimulating, etc.) and help it to nudge you toward sleep.

 

I always also use a sleep app called iSleepEasy to help me fall asleep and then to put me back to sleep when I wake in the middle of the night, which I always do, wake up. So my brain is sort of trained to associated sleep with the Q nudge plus the night routine plus the sleep app.

 

BTW, I slowly tapered from 25mg down to 19mg using liquid titration (suspend, pull and pitch every night). I had bad symptoms. I wouldn't try to taper too fast or make dramatic changes. Q can be hard just like benzos for some people. I would also try SurvivingAntidepresants for more info. I found some over there.

 

I hope that made some sense. I'm in a depressing, crippling brain fog and these past few days.

 

Gard

 

 

[[He...]]

Bad dove,

Sorry about the seroquel problems you've been having. I know nothing about that drug. But I do remember you posting about it in the past. Seems like you have had problems with that drug a lot in the past.

Do you really need it?

Have you tried to eliminate it altogether?

Is it something that needs to be tapered off of like a benzo or can you just stop taking it?

Is there a different drug that does the same thing that seroquel does that might agree with your system better?

As I said, I know nothing about seroquel so my questions may be way off base.

Just trying to help.

 

Wishing you relief real soon.

 

Heath

[[ga...]]

Bad dove,

Sorry about the seroquel problems you've been having. I know nothing about that drug. But I do remember you posting about it in the past. Seems like you have had problems with that drug a lot in the past.

Do you really need it?

Have you tried to eliminate it altogether?

Is it something that needs to be tapered off of like a benzo or can you just stop taking it?

Is there a different drug that does the same thing that seroquel does that might agree with your system better?

As I said, I know nothing about seroquel so my questions may be way off base.

Just trying to help.

 

Wishing you relief real soon.

 

Heath

 

Heath and Dove, Some people use sedating antidepressants that have an antihistamine effect (like Q) for sleep. It's the histamine-blocker that's the sleep aid. They are safer as far as side effects than Q. Sadly, I cannot take most of them, so I am stuck with Q. However, all these drugs need to be tapered up and down slowly. My pharmacist told me I could taper up on one while tapering down on the other but I decided not to try it. Didn't want to muddy the waters. Just sticking with the Q and hoping it doesn't burn out before I get my sleep issue solved (the benzo was prescribed as a sleeping pill).

 

I sympathize with the problems of that morning dose. If I try to fight my Q hangover I get really freaked out. So I just try to keep my brain in neutral and do little (putter around the house) and wait for it to wear off. And that's from the night dose making me hung over most of the morning.

 

Sorry if I'm rambling. Hope I'm not confusing anyone.

[[ba...]]

Valley and Gard and others-thanks for the taper link. I am at 15mg a night (dose 1) not 1.5, fixed that. The problem with dropping dose 2 is that it sent my anxiety through the roof. Seroquel calms anxiety. It's not generally considered addictive, but if you are tapering off benzos, and take it away, it will bite you. And, hard.

 

My brain is so acclimated to the sero, that it is a process to get it to adjust. Just stopping the am dose  would probably be fine if I wasn't on benzo's. My doc told me to take a second, much smaller dose because I get so little sleep.

 

Anyway, I am going to start tapering down that am dose from here. Learned I need to leave the pm dose at 15 mg, I have more wiggle with the early am dose.

 

It's a learning process.

 

 

[[ga...]]

Valley and Gard and others-thanks for the taper link. I am at 15mg a night (dose 1) not 1.5, fixed that. The problem with dropping dose 2 is that it sent my anxiety through the roof. Seroquel calms anxiety. It's not generally considered addictive, but if you are tapering off benzos, and take it away, it will bite you. And, hard.

 

My brain is so acclimated to the sero, that it is a process to get it to adjust. Just stopping the am dose  would probably be fine if I wasn't on benzo's. My doc told me to take a second, much smaller dose because I get so little sleep.

 

Anyway, I am going to start tapering down that am dose from here. Learned I need to leave the pm dose at 15 mg, I have more wiggle with the early am dose.

 

It's a learning process.

 

I think you're on the right track. Leave the PM dose and slowly taper away the morning dose. I can't see how the morning dose is doing much good. The hangover must be just awful.

[[...]]

HI , just checking in on everyone..... I'm sorry about seroquil Baddove... But sounds like you have a plan now, I hope it's easeful for you.

 

Thinking of you SS.

 

Heath, Gard,  Valley, Be good , Lynn, hope you are all hanging in there with whatever weirdness this process is giving .... Yes Begood, Benzos just keep on giving! 

 

Me.... Well , my little window closed , not a surprise . I had a hard day today of burning and feeling frustrated , depressed . My mind goes crazy with thinking other things are wrong too! But I am sure it is all WD . Including the obsessing about other things being wrong.

Feeling a bit  better this eve , I always do feel better by evening. Not , ready to go out on the town better, but somehow more at peace in the evenings .

 

:hug: MiYu

[[He...]]

MIYU

Sorry you are still having burning. I too am frustrated with all the wierd  sx that the benzos "keep on giving". The pins and needles are still with me, and today  I have gotten some sharp pains in my feet that came out of nowhere.  This has got to be wd sxs because they are just too wierd and have no pattern or sensible explanation. I'm beginning to wonder what the heck is going to happen next.

 

With me its day 10 of my -.02 cut of Valium.and since it takes about ten days for a new Valium dose to become the steady dose in one's bloodstream, I hope my body will settle down and get used to the new drop in dose. And just MAYBE my CNS will settle down and LEAVE ME ALONE!

 

I'm glad you have some good moments in the evenings. I think that's a good sign. When I was in deep despair at the beginning of my taper with bad side effects, the first sign of healing was little Windows in the evenings. I think this is a sign of real healing beginning to happen for you. So hang in there! Your big break might be right around the corner! You are still holding, right?

 

I hope everyone who is suffering will have a big turn around really soon.

 

Heath :smitten:

[[fr...]]

  Yes Heath, those pains in toes, I get them also along with the burning.  I do think it is all w/d related but with my spinal issues the dr always wants to do another procedure, test or add a med.  I know they are trying to help but I am not up for any of it.  Praying for all to have big windows.  Sorry your window closed MiYu but good sign that you got one.  I have never had one yet.  Holding on another day.  Love to all.

[[ly...]]

 

 

Heath!

 

I keep getting reminded of sxs that I had forgotten about - pain in the feet!  I had awful pain in the soles of my feet and also shooting pain in my toes.  I haven't had this for awhile but it came and went with cuts for months.  Just a constellation of random nonsense!  It helped me to know that these things were just par for the course.  The only thing I haven't had is a pain in the butt!...now I've jinxed myself!

[[ly...]]

 

 

MiYu,

 

Sorry the window closed but so very glad that you had a little bit of daylight!

[[be...]]

MiYu, every little window that opens is a blessing indeed, I know you enjoyed it, and it shows that things are healing your Precious Brain, it is going to take as long as it takes, no sooner, it decides that part of your healing, the other part is your attitude I truly believe and from your posts you have a great one, Hang on and we are here for you.

[[Va...]]

MiYu, sorry about the continued battle with sxs. The windows in the evening are a very good sign that you are stabilising. They should start lasting longer and opening wider.

 

Heath and free, foot pain has been with me even before I started to taper. It feels like I'm walking on a golf ball and my toes hurt all the time. I've had it so long I forget to mention it when I discuss my own withdrawal. Currently I'm finding the nerve and muscle pain is letting up some and being replaced by mental sxs. To be honest, I think I can deal with the pain better lol. Definitely time for me to hold again. I have a couple more days of cutting then I'll settle in for a long hold.  --V

[[be...]]

MiYu, sorry about the continued battle with sxs. The windows in the evening are a very good sign that you are stabilising. They should start lasting longer and opening wider.

 

Heath and free, foot pain has been with me even before I started to taper. It feels like I'm walking on a golf ball and my toes hurt all the time. I've had it so long I forget to mention it when I discuss my own withdrawal. Currently I'm finding the nerve and muscle pain is letting up some and being replaced by mental sxs. To be honest, I think I can deal with the pain better lol. Definitely time for me to hold again. I have a couple more days of cutting then I'll settle in for a long hold.  --V

Hey you, I am in agreement about the mental thing, off and on I have had the "Sadness thing", but it goes away, but it is like a elephant is sitting on my heart. I can deal with aches and pains, I have a high pain threshold, having Osteo Arthritis and I just do not take anything for it, and go about my day, and it gets better. But that is just me, I have always been "different" like I said, I think I am lacking in my Brain somehow...

[[Va...]]

MiYu, sorry about the continued battle with sxs. The windows in the evening are a very good sign that you are stabilising. They should start lasting longer and opening wider.

 

Heath and free, foot pain has been with me even before I started to taper. It feels like I'm walking on a golf ball and my toes hurt all the time. I've had it so long I forget to mention it when I discuss my own withdrawal. Currently I'm finding the nerve and muscle pain is letting up some and being replaced by mental sxs. To be honest, I think I can deal with the pain better lol. Definitely time for me to hold again. I have a couple more days of cutting then I'll settle in for a long hold.  --V

Hey you, I am in agreement about the mental thing, off and on I have had the "Sadness thing", but it goes away, but it is like a elephant is sitting on my heart. I can deal with aches and pains, I have a high pain threshold, having Osteo Arthritis and I just do not take anything for it, and go about my day, and it gets better. But that is just me, I have always been "different" like I said, I think I am lacking in my Brain somehow...

I agree BG. I've had chronic pain from a rare disorder for 7 years so the pain I can handle. The mental garbage is what interferes with my ability to fully function as I become apathetic about everything so I don't get as much done because I keep putting things off.  --V

[[be...]]

MiYu, sorry about the continued battle with sxs. The windows in the evening are a very good sign that you are stabilising. They should start lasting longer and opening wider.

 

Heath and free, foot pain has been with me even before I started to taper. It feels like I'm walking on a golf ball and my toes hurt all the time. I've had it so long I forget to mention it when I discuss my own withdrawal. Currently I'm finding the nerve and muscle pain is letting up some and being replaced by mental sxs. To be honest, I think I can deal with the pain better lol. Definitely time for me to hold again. I have a couple more days of cutting then I'll settle in for a long hold.  --V

Hey you, I am in agreement about the mental thing, off and on I have had the "Sadness thing", but it goes away, but it is like a elephant is sitting on my heart. I can deal with aches and pains, I have a high pain threshold, having Osteo Arthritis and I just do not take anything for it, and go about my day, and it gets better. But that is just me, I have always been "different" like I said, I think I am lacking in my Brain somehow...

I agree BG. I've had chronic pain from a rare disorder for 7 years so the pain I can handle. The mental garbage is what interferes with my ability to fully function as I become apathetic about everything so I don't get as much done because I keep putting things off.  --V

Thankfully my sadness just pulls my heart strings and it goes away soon, and I can still function, but I had bad periods after my Parents and Brother died, but that is normal to feel, anything the benzo butt gives us is not a gift, for sure. Oh have you heard from Anne?