The Long Hold Support Group

[[an...]]

 

Today was my first appointment with the speech therapist for the swallowing..and she looked at all 4 of my swallow tests and the digital swallow with food.. and her conclusion is from getting off the benzo that it has heightened my sensitivity to swallowing cause from watching the swallows she can see nothing there...she said that she truly believes that i feel what i feel but she works with alot of chemo patients that get this and says it has to be worked through physically as well as mentally.

 

I start 2 times a week next week and shes going to work or relaxation, breathing, swallowing and excepting that i can eat..today she had me swallow not only water but sliced peach, water thickened with corn starch, and graham cracker and it went down easily even though it gave me that feeling. She said also from going so long without eating that shes sure my throat is weak also along with my body so shes also putting me into physical theraphy.

 

its sad that my doctors couldnt tell me why my heart rate would go up when i swallowed and she told me its due to it being weak so it takes more energy now and that of course makes the heart rate go up..

 

so lots of work ahead of me..she wants me to also go to a psychologist to get some help to work through things also..she said she has to help me program my brain that the food is going down and not to think so much about it..that she has had people make great turn arounds in like 6 weeks that would be so awesome. she said my stomach will also be sensitive to whole food again so it will be a slow go also.

 

she wants me up and moving more and shes also going to give things to terri to work with me with to help. i weighed today and weighed 101.5..i had hit 100 so thats a positive now if i can just hold onto it. and get back to 125 one day.

 

i wish now i would have held on at 1.75mgs instead being at 2.75mgs now and not sure how i will ever start my taper again i am terrified of it.

 

monday i go to the new cardio doc and hopefully will know more after that about the SVT and hope she knows some things about benzos..

 

i keep reading about things changing with scripts for benzos and i am now terrified especially if they make it a class III drug next yr..i could never taper off in 2 yrs i dont think..not as slow as i was going..terri tells me to stop worrying before i need too..

 

 

will catch up later with everyone..

just hope i get to taper soon again..i wanted a long hold but not because i was to physically sick to do anything but hold.

 

everyone here is in my thoughts

 

hugs

deep

 

Hi Deep,

 

It seems that you are on the right path.  I am so happy to hear that a blockage was not found.  I think you will get back to eating again very soon.  I am so sorry for the hell that you have been through over the months.  I think of you often. 

 

Please keep us updated on how you are doing.  I have a feeling you will see improvement from here on in.  Do not worry about the up dose or the taper for now.  You will get to a place and time when you will be ready to taper again.  For now you need to focus on getting well.

 

Take care of yourself.

 

Peace and healing to you.

Anne 

[[an...]]

Hi all,

1st I want to say that barometric pressure and humidity definitely effects me negatively.

 

I had hubby take me to ER on Saturday morning...my neck and the brain fog was so bad I had myself convinced I had a brain infection.

 

After MRI and blood work heart monitor etc...my blood work came back great (from ER) but MRI showed degenerative Disc disease and "significant" herniated discs in neck along with "sinus disease" whatever that means (sinusitis still?)

 

So Dr there said nothing was "emergent" (yeah right, come take a a second inside my head)  to follow up with ENT surgeon in 2 weeks and also make apt with neuro surgeon for neck.

 

guess lymph nodes are not even a problem!!! 

 

this Saturday is 5 weeks and I am NO better at all....I do not know what to do. I thought well I may as well start to taper on Saturday because holding has not given me any relief.

 

then I get scared to taper while I am waiting to see these specialists.

 

my head is so fogged and whacked I have a hard time driving or doing anything now.

Have not been to prayer meeting on Wed nights for 4 weeks now. Going to church is a challenge.

 

went to stores today but honestly I have no idea how I did it...was in and out of each place so fast  because my head feels like I am going to pass out!!!

 

I know none of you have any answers...I just feel like along with Liz and Free, we are not going to experience what you have Valley.  Makes me so scared and sad

 

Back to the question about the weather....I have read and was told by neurologist that Vestibular migraines will absolutely be effected by the weather changes.

 

its been blasting hot...then raining....then hot..when the barometric is above 30 is when I feel my best which still is complete CRAPOLA..but better then how its been lately because its been below 30 for over a week now

 

Hi Lainey,

 

I am happy to hear that all is well with the lymph nodes.  That must be a relief. 

 

Take care of yourself.  I hope you find some relief soon.

 

Anne 

[[an...]]

Trying not to be, but I'm really scared and discouraged today. I'm hoping it's the weather (that I sm not out in) but I feel so physically sick and the mental stuff has gotten much worse the last few days--DP/DR, brain fog, confusion, frantic, blurry vision, adrenaline surges. I know it's windows and waves in a hold but it's discouraging to be at 5 months and wonder if all of this is just side effects--though it also feels like major withdrawal. I'm starting to think I'm not going to get back to those few days of stability I had last fall after I updosed from 1 mg of K to 1.25 mg. I was actually having a "light at the end of the tunnel" week last week. I wish I knew for sure that this hold was going to pay off--that's what is the worst--the not knowing if the battle is going to be over in a few months and I will reach stability. I can't seem to win no matter what I do. Microtapering made me worse than I am now but this is just such a merciless process.

Sorry. Can't cry to anyone here about it. Thanks for listening. Love you all

 

Liza,

 

I am sorry you are feeling so bad.  The weather does affect me when I am outside in the humidity.  As long as the air is on in the house I feel better.  It has to be turned down very low though.  When I exert myself, even with the air on, I tend to feel symptomatic.  I hope you see some improvement soon.  The fact that you can now work on the computer is a good sign.  Just hang in there.  We are all here for you!!

 

Anne  :smitten:

[[an...]]

 

Best of luck Heathcliff!  We are all pulling for you!  :smitten:

 

Same here!!  :thumbsup:

[[li...]]

Thanks Anne--I'm four days into something (wave?) where my frontal love feels like hamburger and I cant work/write again. I hope it's temporary and that I will actually stabilize some day. Been crying again the last four days feeling so hopeless.

 

Valley--so happy for you!

 

Deep and Lainey--I'll tell you what my daughter says--it's all gonna be good in the 'hood!

 

Love y'all

[[Va...]]

Thanks Anne--I'm four days into something (wave?) where my frontal love feels like hamburger and I cant work/write again. I hope it's temporary and that I will actually stabilize some day. Been crying again the last four days feeling so hopeless.

 

Valley--so happy for you!

 

Deep and Lainey--I'll tell you what my daughter says--it's all gonna be good in the 'hood!

 

Love y'all

Liza, I'm sorry I had to laugh at "frontal love". I hate it when that happens lol. I also hate spell check!  Hope you feel better soon!  --V

[[li...]]

You're like my older brother V who has made fun of me for fifty years. I feel very much at home.

[[Va...]]

You're like my older brother V who has made fun of me for fifty years. I feel very much at home.

LOL. I knew what you meant. 

[[Ro...]]

Hi Happy me,

 

I took progesterone for cysts. It makes me feel terrible - heavy waves, increased withdrawal symptoms! I took in only when I had cysts - approx. 5-7 days and after that the waves didn'leave me a month. Now I take only Vit. B and I know it's sounds crazy but it helps me not to have cysts (they starts with the last pill of Rivotril).

 

Hugs

[[He...]]

Liza gal,

I hear what you are  saying and I can certainly relate to what you are going through. I feel so badly that you are having a tough time.  but hopefully things will settle down and you'll be able to go forward real soon.

 

I know how easy we can all get discouraged.

I just finished a short .01 micro taper for five days, after holding for two months. I went from 1.25 to 1.2  Golly it's only a 20th  of a milligram!

First two days were no sfx but today was the fifth day. I woke up with a window that lasted until about 3:00 , longest window I ever had. Feeling really positive!

But a 3:00 all hell broke loose. Parathesia came back, headache, general sickly feeling.

 

I too don't know if it's side effects from the cut, which are to be expected, or whether it will get worse tomorrow and it's my brain saying...aha! You didn't hold long enough before you started to cut.

 

Damn, I was so discouraged. I thought I could finally get going with my tapering again. But with these side effects... I don't know!

 

So then at 8:00 tonight, another window opened up. And it's still here at 9.20. It's so crazy, I just don't ever know what to expect.

So I am kind of afraid if what tomorrow will bring, but I am holding again for at least 2or3 weeks, at 1.2 as I had planned,to see what happens. Only time will tell if I am just experiencing regular withdrawal or if things are going to get really bad again and I'll have to go back to a long hold.

 

Just wanted to say that these drugs' withdrawal side affects are really unpredictable. Dont worry if you can't figure things out sometimes. Eventually the answers you are seeking will become clearer. I never had to hold before my two month hold, and that is really not long at all compared to a lot of the people here at the long hold group.

Believe me, I know it's easy to be positive when one is feeling good, but when you are in the throes of bad withdrawal, things can feel hopeless and horrible. But they really are NOT hopeless.  Eventually, they get better. I hope you get relief real soon. And I hope the humidity and heat let up . I live in CA and the heat is brutal.But there is practically no humidity, so you must have it much worse than me.

Good luck, hangin there!

 

[[He...]]

ValleyUm, good luck with your new cut! . I hope it goes smoothly for you!

[[He...]]

Anne,

Yikes! I just clicked on the link to see your long taper. Youve been tapering for so long and in such tiny amounts!

Oh how I hope I can do that. , I am so impatient! I wonder where you got your patience and strength to keep that going and not go faster.

All power to you! I hope you get off this stuff with as little trepidation and pain as possible.

 

I got down to my goal of 1.2 Now I will hold at 1.2and see what happens. It was touch and go today. I'll see what happens tomorrow.

 

Heathcliff

[[li...]]

Bless you Heathcliff--I appreciate the encouragement. I know I've been much worse but I keep praying that I will stabilize

[[ly...]]

 

Heathcliff,  I am hoping for the best but do believe we all have some wd after a cut.  I'd be surprised if things didn't settle down and resolve after a couple of weeks.  I have joined you and Valley and made a 10% cut yesterday.  I'm a little anxious about it but not overly.

 

Your encouragement and words of wisdom are wonderful.  It's amazing to witness the generous support of this group.  I've got my fingers crossed for all of us.

[[an...]]

Anne,

Yikes! I just clicked on the link to see your long taper. Youve been tapering for so long and in such tiny amounts!

Oh how I hope I can do that. , I am so impatient! I wonder where you got your patience and strength to keep that going and not go faster.

All power to you! I hope you get off this stuff with as little trepidation and pain as possible.

 

I got down to my goal of 1.2 Now I will hold at 1.2and see what happens. It was touch and go today. I'll see what happens tomorrow.

 

Heathcliff

 

Hi Heath,

 

Yes, it has taken  a while.  I am doing a daily liquid taper.  I went through a very successful taper back in 2007.  It was much smoother than this one, but it did take a year and a half to taper from 0.75 mg Ativan.  I was pretty much symptom free throughout.  When I jumped, I had no problems whatsoever.  I believe this is because I had no symptoms when I started tapering.  I was in bad shape before I even knew about the problems Ativan could cause.  After months of being barely functional, I up dosed and stabilized before tapering.  This time was different.  I had symptoms when I started my taper, and they have continued throughout. I tapered down to 0.25 mg quickly, but got stuck when I got down to about 0.168 mg/day back in May.  I felt terrible for several weeks, and then finally up dosed to 0.204 mg last month.  It has taken a while, but I am finally feeling much better.  I actually have days where I feel normal now.  I plan on holding a while longer, and then resume the taper.  My main goal is to remain functional so I can work and live my life. I think it will take a year to finish the remainder of my taper, but I am okay with that.  From my first experience with tapering, I know that it is possible to get off this drug with little to no symptoms by implementing a slow taper which is why I am patient. 

 

It sounds like you will stabilize soon.  You are experiencing windows and that is a good sign.  Just listen to your body, be willing to adjust your taper as you get to lower doses, and incorporate holds when needed. There is no reason to rush. 

 

Peace and healing to you.

Anne 

[[an...]]

 

Heathcliff,  I am hoping for the best but do believe we all have some wd after a cut.  I'd be surprised if things didn't settle down and resolve after a couple of weeks.  I have joined you and Valley and made a 10% cut yesterday.  I'm a little anxious about it but not overly.

 

Your encouragement and words of wisdom are wonderful.  It's amazing to witness the generous support of this group.  I've got my fingers crossed for all of us.

 

Lynn,

 

Good luck with the cut.  I am sure you will do well.

 

I also appreciate the supportive members in this group.  I wish nothing but the best for all of us.

 

Anne

[[an...]]

Bless you Heathcliff--I appreciate the encouragement. I know I've been much worse but I keep praying that I will stabilize

 

Liza,

 

Hang in there.  I know that is easier said than done.  Things will turn around for you when you least expect it.  That is always the case for me.  When I am in the midst of symptoms, I think they will never resolve and they usually do.

 

Take care of yourself,

 

Anne

[[fr...]]

  Anne, Hope you are right.  I am right there with Liza and Lainey, long hold and really no improvement other than one day I felt almost normal.  So sad and lonely and hopefully it will get better for us soon. 

[[Va...]]

Bless you Heathcliff--I appreciate the encouragement. I know I've been much worse but I keep praying that I will stabilize

 

Liza,

 

Hang in there.  I know that is easier said than done.  Things will turn around for you when you least expect it.  That is always the case for me.  When I am in the midst of symptoms, I think they will never resolve and they usually do.

 

Take care of yourself,

 

Anne

Isn't that the truth Anne. The improvement from withdrawal is so slight and barely perceptible for quite awhile. Throw in the non linearity and it seems things will never change. You really have to focus on the minor improvements and be patient and Windows should start coming eventually. I'm glad I forced the 6 month hold. Depression seemed to be the main issue at the end but is letting up with the cut I just made. Must be the psychological boost of finally cutting again. Hope all struggling have patience with holding.  It does take commitment and determination. I wouldn't have believed it if I hadn't done it myself and may again just to be safe down the road.  --V

[[Va...]]

  Anne, Hope you are right.  I am right there with Liza and Lainey, long hold and really no improvement other than one day I felt almost normal.  So sad and lonely and hopefully it will get better for us soon.

Free, I'm holding out hope for all of you.  I really do hope it gets better for all of you soon and you get more "almost normal days".  --V

[[ca...]]

Bless you Heathcliff--I appreciate the encouragement. I know I've been much worse but I keep praying that I will stabilize

 

Liza,

 

Hang in there.  I know that is easier said than done.  Things will turn around for you when you least expect it.  That is always the case for me.  When I am in the midst of symptoms, I think they will never resolve and they usually do.

 

Take care of yourself,

 

Anne

Isn't that the truth Anne. The improvement from withdrawal is so slight and barely perceptible for quite awhile. Throw in the non linearity and it seems things will never change. You really have to focus on the minor improvements and be patient and Windows should start coming eventually. I'm glad I forced the 6 month hold. Depression seemed to be the main issue at the end but is letting up with the cut I just made. Must be the psychological boost of finally cutting again. Hope all struggling have patience with holding.  It does take commitment and determination. I wouldn't have believed it if I hadn't done it myself and may again just to be safe down the road.  --V

Valley, been watching this thread closely an you have been a big help to many ! Going to pay close attention to when and how you feel this last cut you made as this V is so weird when a cut is made and also not very Linear ! Good Luck I am pulling for you and everyone else ~CD

[[Va...]]

Bless you Heathcliff--I appreciate the encouragement. I know I've been much worse but I keep praying that I will stabilize

 

Liza,

 

Hang in there.  I know that is easier said than done.  Things will turn around for you when you least expect it.  That is always the case for me.  When I am in the midst of symptoms, I think they will never resolve and they usually do.

 

Take care of yourself,

 

Anne

Isn't that the truth Anne. The improvement from withdrawal is so slight and barely perceptible for quite awhile. Throw in the non linearity and it seems things will never change. You really have to focus on the minor improvements and be patient and Windows should start coming eventually. I'm glad I forced the 6 month hold. Depression seemed to be the main issue at the end but is letting up with the cut I just made. Must be the psychological boost of finally cutting again. Hope all struggling have patience with holding.  It does take commitment and determination. I wouldn't have believed it if I hadn't done it myself and may again just to be safe down the road.  --V

Valley, been watching this thread closely an you have been a big help to many ! Going to pay close attention to when and how you feel this last cut you made as this V is so weird when a cut is made and also not very Linear ! Good Luck I am pulling for you and everyone else ~CD

Thank you CD. Hope you are doing well! At least I know I get hit on day 3 or 4 and my lag time is 10 days when I get hit again which I didn't know when I first started. I am cutting very small so fingers crossed it will be smooth from now on. I'm feeling the cut already but it's very minor.  --V

[[Ho...]]

Bless you Heathcliff--I appreciate the encouragement. I know I've been much worse but I keep praying that I will stabilize

 

Liza,

 

Hang in there.  I know that is easier said than done.  Things will turn around for you when you least expect it.  That is always the case for me.  When I am in the midst of symptoms, I think they will never resolve and they usually do.

 

Take care of yourself,

 

Anne

Isn't that the truth Anne. The improvement from withdrawal is so slight and barely perceptible for quite awhile. Throw in the non linearity and it seems things will never change. You really have to focus on the minor improvements and be patient and Windows should start coming eventually. I'm glad I forced the 6 month hold. Depression seemed to be the main issue at the end but is letting up with the cut I just made. Must be the psychological boost of finally cutting again. Hope all struggling have patience with holding.  It does take commitment and determination. I wouldn't have believed it if I hadn't done it myself and may again just to be safe down the road.  --V

Valley, been watching this thread closely an you have been a big help to many ! Going to pay close attention to when and how you feel this last cut you made as this V is so weird when a cut is made and also not very Linear ! Good Luck I am pulling for you and everyone else ~CD

Thank you CD. Hope you are doing well! At least I know I get hit on day 3 or 4 and my lag time is 10 days when I get hit again which I didn't know when I first started. I am cutting very small so fingers crossed it will be smooth from now on. I'm feeling the cut already but it's very minor.  --V

 

Just curious V, are you microtapering or doing cut and hold

now that you have resumed your taper? How much did you cut? Just curious because I'm

around the same dose as you.

[[li...]]

I wonder if I'm being the biggest idiot by not going back up to 1.25 where I felt a handful of good functional days before I started my nano taper in September. I only got down to 1.20 mg of klonopin September to February when I majorly crashed. I wonder if I would have the same experience as Anne. I updosed last year three times to get stable on Ativan and felt better with each updose up to 1.75 mg but then started having fog and fatigue and was mistakenly crossed to 1 mg of K in two weeks. Tapered from there three months and then told by doc to updose to 1.25 and hold for six months before tapering. I only held for 27 days because the good days started to wane so I thought that meant I should cut.

 

Now I'm agonizing over updosing. It's worked every other time but so many say it's a crap shoot. Dang I don't want to freak my brain out any more with what I've been through the last seven years. Thanks for listening. 

[[Va...]]

Bless you Heathcliff--I appreciate the encouragement. I know I've been much worse but I keep praying that I will stabilize

 

Liza,

 

Hang in there.  I know that is easier said than done.  Things will turn around for you when you least expect it.  That is always the case for me.  When I am in the midst of symptoms, I think they will never resolve and they usually do.

 

Take care of yourself,

 

Anne

Isn't that the truth Anne. The improvement from withdrawal is so slight and barely perceptible for quite awhile. Throw in the non linearity and it seems things will never change. You really have to focus on the minor improvements and be patient and Windows should start coming eventually. I'm glad I forced the 6 month hold. Depression seemed to be the main issue at the end but is letting up with the cut I just made. Must be the psychological boost of finally cutting again. Hope all struggling have patience with holding.  It does take commitment and determination. I wouldn't have believed it if I hadn't done it myself and may again just to be safe down the road.  --V

Valley, been watching this thread closely an you have been a big help to many ! Going to pay close attention to when and how you feel this last cut you made as this V is so weird when a cut is made and also not very Linear ! Good Luck I am pulling for you and everyone else ~CD

Thank you CD. Hope you are doing well! At least I know I get hit on day 3 or 4 and my lag time is 10 days when I get hit again which I didn't know when I first started. I am cutting very small so fingers crossed it will be smooth from now on. I'm feeling the cut already but it's very minor.  --V

 

Just curious V, are you microtapering or doing cut and hold

now that you have resumed your taper? How much did you cut? Just curious because I'm

around the same dose as you.

Hi Hope! I'm actually doing cut and hold right now. I just went through a debacle getting my Valium so I didn't get the prescription until I was out of Valium for one day. I didn't have time to liquefy any pills so I'm doing .5 cuts every other day. My plan is to cut .25mg every 2 weeks or more so it would be .02 daily cuts which I will start as soon as I can. I've had a real issue getting my meds lately lol. How are you doing?--V