The Long Hold Support Group

[[ly...]]

 

Solitude,

 

I would probably updose.  Did you feel well when you crossed over to V?  When you were taking A?  These would be some things that I would consider in deciding what to do.  Some just have a real problem with V.  It may take some trial and error but the benefit of a good outcome probably outweighs the risk of updosing.  I have no experiencing with this, with the exception of my c/t, but I believe there are more stories of relief with an updose vs worsening troubles.  Perhaps going straight to adding 1mg of A?  That's if you felt well on it.  If you felt well on the 5mgs of V, I would try that first.  I wouldn't stay the course at this point.

 

Wishing you the best. :smitten:

[[Pl...]]

Yeah I did...It's only a minuscule amount of alcohol in the scheme of things but you know you're body better than anyone so best to go with your instincts. I stopped the daily and just did cut n hold but with the liquid as my dose. So I'd take the same amount each day for 2-3 weeks and then make a cut and sit on that dose for 2-3 weeks etc etc...

That's a good idea Shamo I was eternally worried doing dry cut an hold that the doses weren't even when I was weighing them, it never occurred to me to use the liquid  then at least the dose would be precise .

 

Love Nova xxx  :smitten:

 

Hi nova,    I hope you dont mind me asking,  I thought you had went back to pills because you could barely cut on the liquid... Am I mistaken?  I too worry about the accuracy of the pill weight; but liquid did not work for me regarding kolonopin.... i dont know why... I feel I have no other choice but this worries me greatly too.. ( pill weight)

 

Thank you for taking the time to clarify.....

 

A big hello to everyone on this thread... Trying to lay low from being sick but occupied (sometimes not in a good way) 

everyone is always in my thoughts all the time ....

[[Al...]]

Hi all,

 

Yesterday I went for a massage. It was day 7 since my recent cut but I felt up to it. It was very soothing and immediately afterward I felt great.  This morning my shoulder/ neck muscle stiffness is back with a vengence. I think it was a mistake to get the massage so close to a cut. Next time I will make sure I am at least 15 days past cut date before doing that again.

 

Anyone else experience this?

 

Thanks

 

ATU

[[fr...]]

  Solitude,  I would also updose or find what would make you the most comfortable.  I am so sorry you are facing such an issue and will hope that your markers are ok and you can get that worry off of you.  Thinking of you and what you are facing makes this so much harder for you but never give up hope.  Drs. don't know everything. 

[[an...]]

 

hi Anne me again, sorry, I was looking at all the syringes I bought and I have bd catheter tip 60 mls and the others one is monoject brand 10 ml and the 1 ml is the brand tuberculin, I'm not sure if you're familiar with those brands? Also the 10 ml and 1 ml are " luer slip tip" I know there is another kind of tip, can't remember at the moment. Should I have gotten the luer slip tip? Can you recommend a brand? I have not switched to liquid yet. Considering reordering all my syringes  thank you nicole

 

Don't worry about the tips--you are not using a needle.  I see no reason to order different syringes. 

 

Anne

[[an...]]

Hi Solitude,

 

I am sorry for what you are going through.  I have been taking Ativan for 5 years now.  I had no problem with reinstatements.  They worked for me.  Good luck to you.

Anne

[[so...]]

 

Solitude,

 

I would probably updose.  Did you feel well when you crossed over to V?  When you were taking A?  These would be some things that I would consider in deciding what to do.  Some just have a real problem with V.  It may take some trial and error but the benefit of a good outcome probably outweighs the risk of updosing.  I have no experiencing with this, with the exception of my c/t, but I believe there are more stories of relief with an updose vs worsening troubles.  Perhaps going straight to adding 1mg of A?  That's if you felt well on it.  If you felt well on the 5mgs of V, I would try that first.  I wouldn't stay the course at this point.

 

Wishing you the best. :smitten:

 

 

 

Thanks Begood and Lynn. It is unfortunately difficult to say if I felt okay when I was taking the Ativan, because I was doing chemo at the same time so I felt hideous the whole time. Once done with chemo, I almost immediately started to try to get off the Ativan, and started feeling really weird and sick, but in a different way than the chemo.

 

My crossover to diazepam was pretty uneventful, and I completed it within a week. In looking through my notebook, where I noted my symptoms and "ranked" each day, it looks pretty clear that at 6, 5, 4 mg I felt better than I do now. I would keel over from a cut, but then rise up again.

 

Things got more funky as I ventured below 4 mg, and I do think the flu shot sent me over some funky cliff too. I felt absolutely terrible for a while after that. Since the flu shot and going below 4 mg, things just haven't been the same.

 

So yeah, maybe kicking back up to 4 or 5 mg might help. That sure would be nice.

 

But we all are familiar with the fear of making changes with this horrid drug. It's like having a tiger by the tail.

[[so...]]

Hi Solitude,

 

I am sorry for what you are going through.  I have been taking Ativan for 5 years now.  I had no problem with reinstatements.  They worked for me.  Good luck to you.

Anne

 

 

 

Thanks Free and Anne. Anne, good to know that your reinstatements were successful. Encouraging!

[[be...]]

Yeah I did...It's only a minuscule amount of alcohol in the scheme of things but you know you're body better than anyone so best to go with your instincts. I stopped the daily and just did cut n hold but with the liquid as my dose. So I'd take the same amount each day for 2-3 weeks and then make a cut and sit on that dose for 2-3 weeks etc etc...

That's a good idea Shamo I was eternally worried doing dry cut an hold that the doses weren't even when I was weighing them, it never occurred to me to use the liquid  then at least the dose would be precise .

 

Love Nova xxx  :smitten:

 

Hi nova,    I hope you dont mind me asking,  I thought you had went back to pills because you could barely cut on the liquid... Am I mistaken?  I too worry about the accuracy of the pill weight; but liquid did not work for me regarding kolonopin.... i dont know why... I feel I have no other choice but this worries me greatly too.. ( pill weight)

 

Thank you for taking the time to clarify.....

 

A big hello to everyone on this thread... Trying to lay low from being sick but occupied (sometimes not in a good way) 

everyone is always in my thoughts all the time ....

A big Hello to you Please, we are thinking of you and know that you are going to be better, hang in there and do what you can when you can.

[[Pl...]]

Yeah I did...It's only a minuscule amount of alcohol in the scheme of things but you know you're body better than anyone so best to go with your instincts. I stopped the daily and just did cut n hold but with the liquid as my dose. So I'd take the same amount each day for 2-3 weeks and then make a cut and sit on that dose for 2-3 weeks etc etc...

That's a good idea Shamo I was eternally worried doing dry cut an hold that the doses weren't even when I was weighing them, it never occurred to me to use the liquid  then at least the dose would be precise .

 

Love Nova xxx  :smitten:

 

Hi nova,    I hope you dont mind me asking,  I thought you had went back to pills because you could barely cut on the liquid... Am I mistaken?  I too worry about the accuracy of the pill weight; but liquid did not work for me regarding kolonopin.... i dont know why... I feel I have no other choice but this worries me greatly too.. ( pill weight)

 

Thank you for taking the time to clarify.....

 

A big hello to everyone on this thread... Trying to lay low from being sick but occupied (sometimes not in a good way) 

everyone is always in my thoughts all the time ....

A big Hello to you Please, we are thinking of you and know that you are going to be better, hang in there and do what you can when you can.

 

Oh begood you just made me feel so much better about myself... Its just what I needed to hear....whether I believe it or not... I can't thank you enough because my mind is really messing with me right now.... Big big big big hugs ((.      )))) and the symbol for love   

[[be...]]

Yeah I did...It's only a minuscule amount of alcohol in the scheme of things but you know you're body better than anyone so best to go with your instincts. I stopped the daily and just did cut n hold but with the liquid as my dose. So I'd take the same amount each day for 2-3 weeks and then make a cut and sit on that dose for 2-3 weeks etc etc...

That's a good idea Shamo I was eternally worried doing dry cut an hold that the doses weren't even when I was weighing them, it never occurred to me to use the liquid  then at least the dose would be precise .

 

Love Nova xxx  :smitten:

 

Hi nova,    I hope you dont mind me asking,  I thought you had went back to pills because you could barely cut on the liquid... Am I mistaken?  I too worry about the accuracy of the pill weight; but liquid did not work for me regarding kolonopin.... i dont know why... I feel I have no other choice but this worries me greatly too.. ( pill weight)

 

Thank you for taking the time to clarify.....

 

A big hello to everyone on this thread... Trying to lay low from being sick but occupied (sometimes not in a good way) 

everyone is always in my thoughts all the time ....

A big Hello to you Please, we are thinking of you and know that you are going to be better, hang in there and do what you can when you can.

 

Oh begood you just made me feel so much better about myself... Its just what I needed to hear....whether I believe it or not... I can't thank you enough because my mind is really messing with me right now.... Big big big big hugs ((.      )))) and the symbol for love 

[[ho...]]

Hope, I use excel 60ml catheter tip and monojet 10ml oral syringes. Right now I am using the large syringe to pull amounts over 10ml and the smaller syringe to pull amounts under 10ml. You know how to get the air bubbles out and that the amount in the tip is not part of the measurement, right?

 

Gard

hi gard thank you for responding. I am currently holding due to massive cuts in a short period but actually no I know nothing about syringes. I put a post somewhere about syringes. I have two different brands so I think I'm going to reorder all same brand syringes. However I heard the bd catheter tip 60 ml syringe was the best. I also got luer slip tip and I know there's another kind of tip so I'm not sure if that's right either. Thanks gard.

[[ho...]]

 

hi Anne me again, sorry, I was looking at all the syringes I bought and I have bd catheter tip 60 mls and the others one is monoject brand 10 ml and the 1 ml is the brand tuberculin, I'm not sure if you're familiar with those brands? Also the 10 ml and 1 ml are " luer slip tip" I know there is another kind of tip, can't remember at the moment. Should I have gotten the luer slip tip? Can you recommend a brand? I have not switched to liquid yet. Considering reordering all my syringes  thank you nicole

 

Don't worry about the tips--you are not using a needle.  I see no reason to order different syringes. 

 

Anne

hi Anne should they all be the same brand though?what is luer slip tip? That's what it says on description when I bought them on ebay. Thank you for your help. Nicole

[[Va...]]

 

Solitude,

 

I would probably updose.  Did you feel well when you crossed over to V?  When you were taking A?  These would be some things that I would consider in deciding what to do.  Some just have a real problem with V.  It may take some trial and error but the benefit of a good outcome probably outweighs the risk of updosing.  I have no experiencing with this, with the exception of my c/t, but I believe there are more stories of relief with an updose vs worsening troubles.  Perhaps going straight to adding 1mg of A?  That's if you felt well on it.  If you felt well on the 5mgs of V, I would try that first.  I wouldn't stay the course at this point.

 

Wishing you the best. :smitten:

 

 

 

Thanks Begood and Lynn. It is unfortunately difficult to say if I felt okay when I was taking the Ativan, because I was doing chemo at the same time so I felt hideous the whole time. Once done with chemo, I almost immediately started to try to get off the Ativan, and started feeling really weird and sick, but in a different way than the chemo.

 

My crossover to diazepam was pretty uneventful, and I completed it within a week. In looking through my notebook, where I noted my symptoms and "ranked" each day, it looks pretty clear that at 6, 5, 4 mg I felt better than I do now. I would keel over from a cut, but then rise up again.

 

Things got more funky as I ventured below 4 mg, and I do think the flu shot sent me over some funky cliff too. I felt absolutely terrible for a while after that. Since the flu shot and going below 4 mg, things just haven't been the same.

 

So yeah, maybe kicking back up to 4 or 5 mg might help. That sure would be nice.

 

But we all are familiar with the fear of making changes with this horrid drug. It's like having a tiger by the tail.

Hi Solitude. So sorry for the ongoing problems. I would definitely agree on the updose. The rewards outweigh the risks IMO. You are definitely strong for working while going through this.  --V

[[Va...]]

So good to see you here Please!  --V

[[Ki...]]

I have been on this board for a year now and maybe its just my imagination but I dont think so- WTH is with so many people having such a hard time when they get to 4 mg on V? Its just all over this forum! I think when I start getting close to 4 mg Im going to " pretend" Im at 6 or something. I really dont think Im imagining it...

[[ho...]]

I have been on this board for a year now and maybe its just my imagination but I dont think so- WTH is with so many people having such a hard time when they get to 4 mg on V? Its just all over this forum! I think when I start getting close to 4 mg Im going to " pretend" Im at 6 or something. I really dont think Im imagining it...

I've noticed that too

[[be...]]

I have been on this board for a year now and maybe its just my imagination but I dont think so- WTH is with so many people having such a hard time when they get to 4 mg on V? Its just all over this forum! I think when I start getting close to 4 mg Im going to " pretend" Im at 6 or something. I really dont think Im imagining it...

That may very well be true or not for some, I do not read much on the boards, so that I can keep my balance. I wonder when I read things like a certain number or a certain month, how fast are they doing their taper and have they ever stabilized, too many variables for me, so I toe the line away from the hysteria and speculation it seems to get a life of its own and can cause duress. Good to see you here.

[[ga...]]

Thanks for the encouragement everyone. To answer V's question, I'm really not feeling much better. Continue with the headaches and the nausea, which comes and goes. Sleep is generally crummy, with some abysmal nights thrown in. Overall very tired and zombied, with lots of spacy headed cog-fog. But I do get window moments now and then, not great, but okay times when I'm not so miserable.

 

Update:my cancer may be recurring. The tumor marker we track in my blood work is rising. We test again in two weeks to see if it's still going up.

 

Probably no more tapering for me. I just want to stabilize and be able to do some enjoyable things. For those of you who ever updose, what was your experience? I'm wondering if this will help me. But I have heard that updosing doesn't always help, and some folks felt worse. So I'm afraid of making things worse for myself.

 

I take sleep aids very infrequently, as I want my brain to work properly on its own. When I do take a sleep aid it often just makes things weird but doesn't necessarily help the sleep. And it adds to the zombie feeling the next morning. But perhaps that won't matter as much if the cancer really is back, since I would stop working.

 

Thanks guys. 

Oh, solitude, I'm so very sorry.  :'(

You are so brave. I wish I had something helpful to say. I hope you have loved ones around you, and I hope you get some quality of life back very soon so that you can cherish your time with them.

 

Gard

[[...]]

I have a story of woe today too.....

I think I'm trying to pass a kidney stone. I've made it through today.... It started last night in my right side ( flank) below my waist, and has now travelled to the front and low abdomen, I'm guessing kidney stone because it comes in waves of acute intense stabbing pain.... Ugh.

My friend drove me to see a mutual friend who is a traditional Chinese med therapist . I'm so reluctant to go to hospital. He gave me a formula for dissolving stones, but if it's large and stuck , I may have to go tomorrow to the ER and have them check me out and break it up.

I haven't had pain like this since appendicitis ... It's exhausting . WTH , does it ever end! 

Not fun and I feel kind of delirious.... Anyone have any experience with kidney stones ?

[[so...]]

Thanks everyone, you all rock. 

[[Va...]]

I have a story of woe today too.....

I think I'm trying to pass a kidney stone. I've made it through today.... It started last night in my right side ( flank) below my waist, and has now travelled to the front and low abdomen, I'm guessing kidney stone because it comes in waves of acute intense stabbing pain.... Ugh.

My friend drove me to see a mutual friend who is a traditional Chinese med therapist . I'm so reluctant to go to hospital. He gave me a formula for dissolving stones, but if it's large and stuck , I may have to go tomorrow to the ER and have them check me out and break it up.

I haven't had pain like this since appendicitis ... It's exhausting . WTH , does it ever end! 

Not fun and I feel kind of delirious.... Anyone have any experience with kidney stones ?

Hi MiYu. I only have experience through my father. I watched him suffer with several over the years. I know they are nasty and very painful. I hope the Chinese medicine works. It may not hurt to get it checked out though.  --V

[[ga...]]

I have a story of woe today too.....

I think I'm trying to pass a kidney stone. I've made it through today.... It started last night in my right side ( flank) below my waist, and has now travelled to the front and low abdomen, I'm guessing kidney stone because it comes in waves of acute intense stabbing pain.... Ugh.

My friend drove me to see a mutual friend who is a traditional Chinese med therapist . I'm so reluctant to go to hospital. He gave me a formula for dissolving stones, but if it's large and stuck , I may have to go tomorrow to the ER and have them check me out and break it up.

I haven't had pain like this since appendicitis ... It's exhausting . WTH , does it ever end! 

Not fun and I feel kind of delirious.... Anyone have any experience with kidney stones ?

 

Miyu, SG57 has been battling kidney stones and has talked about it over on the Microtaper thread. He gives quite a bit of detail that you may find helpful (but unpleasant). I think I would recommend going to the hospital. You can always decline any treatment you don't want.

 

Gard

[[He...]]

So much pain on the forum today.  I am so sorry for the pain you MIYU, and you Solitude, are dealing with.

Solitude, I wish you lots of healing in the next few weeks and thereby pushing those numbers in your blood test to a better place and giving you the hope you are seeking . Keep up your positive fight and know that we are all fighting along with you in our hearts and prayers.

 

Miyu, I don't know anything about passing kidney stones except that it is extremely painful, as you probably know. I hope it passes quickly, but if not, perhaps the ER can give you something to help the pain, or at least something to ease the process of passing the stone.

Good luck and fast relief! 

 

 

Heath

[[He...]]

Hi everyone,

 

I am waiting for the ball to drop on my head.

 

I am doing well. I have gotten my two doses down to only two hours apart. 9:30 and 11:30 pm. I will probably just go to  one dose, at bedtime,  in the next two days. I don't understand why it has been so easy. No side effects at all from moving my two doses closer and closer on my way to just one dose. I'm not complaining!

 

I'm just wondering when and if the ball is going to drop on my head.

 

Heath

 

Hoping that everyone, especially the suffering warriors, has  a much better day tomorrow, with lots of Windows opening wide.