HELP, Do I jump or fast taper off, having bad symptoms

[[Ka...]]

I tried several supplements to no avail so no, I don't think there is any faster route to recovery.  Surrender to the process helped me because the kicking and screaming I did just made things worse.  I'm sorry you are there tolnbntp. 

[[to...]]

I tried several supplements to no avail so no, I don't think there is any faster route to recovery.  Surrender to the process helped me because the kicking and screaming I did just made things worse.  I'm sorry you are there tolnbntp. 

 

Hi Kate08 - I am trying so hard to surrender to the process but it is so hard!  My husband keeps saying all day that i will get better and I try so hard to believe that, but I have to say, when you are suffering this bad, it is hard to have hope.  I do know I will get better, but I just need some relief, even for a few moments would help!

 

Thanks!

[[to...]]

Am having a few moments here and there that are better but still have the awful migraines and feel bad.  I do think I am getting a little better, but it changes from minute to minute at times.  Just taking this one day at a time, one minute at a time.

 

Still holding, 15th day of hold at up dose.

 

 

[[Ka...]]

Good to hear things aren't getting worse for you.  You'll know when it feels right to begin a taper again.  No shame in holding, though.

[[je...]]

Overall your post sounds more positive so hopefully you're turning a corner. I'm sorry it's taking so long. The migraines really suck - I get those too. Just keep hanging on! 

[[to...]]

Good to hear things aren't getting worse for you.  You'll know when it feels right to begin a taper again.  No shame in holding, though.

 

Thanks Kate08, I am very grateful they are not getting worse too.  Yes, I will know when it is time to taper again.  I need to be stable and also once I get stable I will stay there for a bit to enjoy feeling better!  I agree there is no shame in holding.  I do not need to make my CNS worse.  I will do what I need to do and taper when my CNS lets me know it can handle it!

 

Thanks for your post! 

 

[[to...]]

Overall your post sounds more positive so hopefully you're turning a corner. I'm sorry it's taking so long. The migraines really suck - I get those too. Just keep hanging on! 

 

Thanks Jelly Baby, I believe that I am turning a corner, very slow but sure!  Thank you - the CNS just needs time from the jolt it has endured plus what I was already dealing with.  At least I know that I need to go much lower before even considering jumping.  Knowledge is power! 

 

Yes - the migraines do suck.  I am so sorry you have them too!  They can make life very difficult some days and nights!  I hope yours will go away at some point!  I have had them before, when I was on the CT and they came back once I tried the jump.  I am sure they will get better with time.

 

I will keep hanging on, I know that once I get through all this that I will be free from this nightmare!  It is worth doing!! 

 

Hugs!

[[to...]]

It has been over 5 weeks and I do not know what to do!  The severe headaches have let up but am still getting headaches, especially after I eat.  Have had a couple panic attacks that were bad!!  Stomach hurting, off balance and dizziness on and off.  The histamine is still awful!  I am so limited in what can eat and even though I have been on a diet for the last 8 months, as of today I have lost 46 pounds.  50 is the goal (was 30 but kept going) but I am concerned once I get to that goal, in a couple more weeks or so, I will have to figure out a way to stop losing weight!

 

I have had times in my taper when I had cut too much and had to hold for a few weeks and sometimes just did not get better and would cut again and it would help.  I wonder if I am at that point now.

 

I have had to take a tiny bit extra of xanax about 3 times or so in the last few weeks and it helped so I wonder if this is tolerance I am dealing with.  I wonder if cutting would jolt my system into feeling better - or do I hold more and keep feeling like crap!  There has to be something I can do to feel even a little better and get back on track!

 

I really thought that the up dose to .1875 mg a day would get me back on track, now I do not know.  I wonder if when I reinstated, if I should have gone lower instead of higher.

 

Any thought would be appreciated.  Trying to make a very wise decision on what to do as I do not want to make another bad decision like I did when I attempted to jump!  Worst decision I have made the whole almost 4 years of tapering!!

 

 

[[Pa...]]

I wish we had the answers you're looking for and I'm so sorry I encouraged you to jump when I did, I feel terrible.  I just don't know what your answer is, it seems like you have no good options and every choice you make leads you to more pain. 

[[to...]]

I wish we had the answers you're looking for and I'm so sorry I encouraged you to jump when I did, I feel terrible.  I just don't know what your answer is, it seems like you have no good options and every choice you make leads you to more pain.

 

Dear Pamster - do not feel terrible.  This is not your fault.  I do not blame you!  I made the decision, and it turned out to be a bad one!  We never know how things will work out since this is all so much of a guessing game!  I was looking for help and I truly should have known better than to jump from .174 mg of xanax.  No one told me to jump, I thought I would be able to, and it turns out that I was wrong!  For someone else, and there are many that have, jumping from that dose, may be the right choice! 

 

My husband said today, since you already feel like sh**, just make a cut!  I told him that I would except that if I get worse, that would be a mistake too!  I tried to explain, briefly, how I feel and the only thing I could possibly compare it to was to remember the worst hangover you have ever had in your life and multiply that by 100. 

 

We come to BB looking for help and answers because we just do not know what to do and the truth is, that what works for one person may not work for another!  The hell we go through brings so many the same WD symptoms but our bodies all seem to process those symptoms in a different way so there is no rhyme or reason to it.  Sometimes just knowing we are not alone is enough to get through the day!  Sometimes just waking up and knowing that I got through yesterday is enough to help me get through today!  Every day is different!

 

This process is hard as hell, and it certainly shows us the strength we have that we never knew existed before this!

 

I guess I am just asking about what others have done to get through a really rough spot and what worked for them to move forward with their taper.  I think I may need to cut in order to move forward.  That has worked for me in the past!  I just do not think staying at this dose is going to help me to feel better!  It has been too long now for that! 

 

Thank you for posting and know that this is not your fault!! 

 

:smitten:

[[Pa...]]

You're very sweet, thank you for letting me off the hook and you're right, we seek answers but those answers only worked for someone else, no guarantee they'll work for us.  I was telling someone today that its okay not to have the answers, sometimes all we can do is acknowledge their pain.  Its so sad this is all we have...

[[to...]]

You're very sweet, thank you for letting me off the hook and you're right, we seek answers but those answers only worked for someone else, no guarantee they'll work for us.  I was telling someone today that its okay not to have the answers, sometimes all we can do is acknowledge their pain.  Its so sad this is all we have...

 

It is sad but you know what?  Just knowing others are here to support us while we are in pain, does help!!  One day, I will be so much better, and I hope that since my journey, good and bad, is posted here, it may help someone else!!  That is what we are all really here for anyway - to help each other!  I agree that it is ok to not have all the answers - I can honestly say though, that the posts, support and understanding I have gotten here have helped me more than words can say!  I would not be here if it were not for BB.  That is the honest truth!! 

 

What really makes me mad is that when I was in CT (2016-2017), I went to so many doctors and not one - even the psychiatrist and therapist I ended up being sent to - did not once tell me that I was in withdrawal. They kept telling me that I had medical anxiety!  Maddening that the doctors that put me on this drug and CT'd me off of it, did not know what this drug can do.  If I had been told I was in WD and at the time it had been months of it, I would never have reinstated, (and put on 4mg a day) and this hell would have not continued on for 6 years.  I am sure it would have taken a while to recover, but I feel sure that this nightmare would have been over a long time ago!  That WD then, is not as bad as this is now in some ways!  The fact that now I have been on this med for over 6 years is what scares me!  I know I will heal one day!  I just have to get through today!  I wish I had found BB then before I was put back on the mediation and my story would be different! 

 

But I also do not believe in coincidences, so I guess this is the journey I was supposed to live! 

[[je...]]

I am sorry tolnbltp

 

I read your log and I know you struggle. I also get the headaches and head pressure. Saturday was a killer for me! I'm lucky I don't have the food intolerances you have. For me it's difficult to know what is long Covid symptoms and what is withdrawal. I guess I'm trying to say, I understand how it feels when you don't know what is causing the symptoms.

 

I so wish I could give you advice that I feel comfortable standing by. But your situation is so difficult. In these situations I do feel you are the only one knowing what you can tolerate and knowing your level of pain and therefore you are truly the only one knowing what is best for you. We will be here every step of the way. I know when you make a decision you just want validation that you're doing the right thing. But you're just going to have to trust yourself that whatever you decide, whether you wait it out or cut, it was the best decision at the time.

 

I know these words are empty, but one day this too will pass. It will not last forever even though it already feels like forever now.

[[to...]]

I am sorry tolnbltp

 

I read your log and I know you struggle. I also get the headaches and head pressure. Saturday was a killer for me! I'm lucky I don't have the food intolerances you have. For me it's difficult to know what is long Covid symptoms and what is withdrawal. I guess I'm trying to say, I understand how it feels when you don't know what is causing the symptoms.

 

I so wish I could give you advice that I feel comfortable standing by. But your situation is so difficult. In these situations I do feel you are the only one knowing what you can tolerate and knowing your level of pain and therefore you are truly the only one knowing what is best for you. We will be here every step of the way. I know when you make a decision you just want validation that you're doing the right thing. But you're just going to have to trust yourself that whatever you decide, whether you wait it out or cut, it was the best decision at the time.

 

I know these words are empty, but one day this too will pass. It will not last forever even though it already feels like forever now.

 

Hi Jelly Baby,

 

Thanks for your post!  Thank you for your compassion!  Sometimes we just need to know others hear us and knowing others are there, means a lot!

 

I am so sorry you get the headaches and head pressure too and I am very sorry that you have been dealing with long covid.  I am fortunate that I have not had that and pray I do not get it!

 

Yes, my situation is difficult and now it has gotten worse in that I feel I have oral thrush.  The roof of my mouth has been sore on and off since the jump and reinstatement but the last few days it is constant and today my tounge is slightly discolored.  I did rinse with warm salt water and took a benadryl to try to help it.  I cannot take so many meds and I do not think it is wise to try adding a med to this!  Will try to do this at home but if I can not get it fixed, will go to my doctor.  I have an appointment on Oct 3 anyway!

 

You are again right that I am the only one who knows me best and what I can and can not tolerate.  It is hard! 

 

I appreciate that you and others are and will be here for me as I go through this hell!  That does help alot!!

 

It is so hard to know what to do as everything seems to make things worse.  I really think most of what I am suffering with is the severe histamine issues that just seem to get worse the lower I go in dose.  I am so limited in what I can eat already and the meds the doctor suggested, I tried and cannot take.  It is so hard when you are so sensitive to medications that could help!  I do the best I can!

 

I sometimes feel like I just need to be put in a darn bubble!!!

 

Your words are not empty to me!  I appreciate the encouragement as it does help to remind me that I will not be like this forever!  You are also right though in that it already feels like it has been forever!

 

I will survive this, and I know one day I will have my life back and feel good again!  Man, it sure is hell though!!

 

I am going to make a cut but am going to start dissolving my pills in water so I get used to that method and then will make a cut soon!  I am hoping that since I drink so much water with my doses anyway that changing to the water method will not be too hard to get used to!  I am referring to the method Kate08 used. 

 

Thank you again for your post and I hope you feel better too, and I know it has to be hard for you to make cuts and taper yourself.  You are in my thoughts and prayers!!

 

:smitten:

[[to...]]

Went to ER yesterday as I really thought I was going to die.  I have had constant 24 hour a day internal shaking and external to a degree.  Stomach hurting really bad and my right leg from the knee down has been numb feeling for a couple days.  My mouth is still sore, and I am not sure what is going on with me.  The off balance is horrible.  Also, the feeling like I am going to fall out is bad! 

 

When I went to the ER, I had to list xanax as a med I am on and the doctor asked about that as I was very anxious when I went in and was scared.  They did blood work and found that I do not have an infection and it was normal.  The doctor chalked this all up to benzo withdrawal and I am not sure I agree with that.  He never even touched me to check my leg, stomach or mouth.  I would have thought that he would have checked my mouth to see if he saw anything and also checked my leg but he did not.  He just went by the blood work and said there was nothing wrong medically.

 

This has happened to me so many times and why I hate going to the hospital.

 

I am frustrated as this is the worst I have ever felt, even when I was on the cold turkey.  This shaking constantly is horrible and my stomach hurting, and the dizziness and off balance are off the charts. 

 

When am I going to get relief???

 

I am wondering what to do and wondering if at this point if I should just start cutting again so i can get off this damn drug.  It has been 7- 1/2 weeks since I jumped and reinstated and 6 -1/2 weeks since i upped my dose to .1875.  Maybe my system wants me to cut!  I just do not know.  I also do not want to do something that will make this worse.  I am suffering more now than ever.  I thought I was getting better until about 7 days ago.

 

In the past I have had rough times and some of those times the only thing that made me better was to cut.  But as I say, I have never been this bad.

 

It also occurred to me yesterday that it has now taken me 3 years to go from 1.25 mg down to this .1875mg.  I do not understand why this is taking me so long to get off of!  It is insanity.  I am really tired of my life being all about withdrawal and suffering.  It is so hard to live this way constantly. 

 

I just need some relief!! 

 

Any thoughts??

[[je...]]

Oh gosh, it must've been really bad for you to decide to go to the ER. And not have a proper examination. I'm truly sorry.

 

What's the longest you held your dose in the past to feel any type of relief?

[[to...]]

Oh gosh, it must've been really bad for you to decide to go to the ER. And not have a proper examination. I'm truly sorry.

 

What's the longest you held your dose in the past to feel any type of relief?

 

Yes, it was and still is horrible!! Thank you!  Yeah, I just read the paperwork I got from the ER and it says the diagnosis is anxiety attack!  What the heck!  I was very anxious, but it looks like the doctor did not take anything I told him about the shaking and leg numbness, stomach pain or thrust infection seriously at all!  I do not even think he waited for the urine test to come back (they did that much later than the blood test) before he just said it was anxiety!  I am so disgusted!  And feel so helpless!  I try to do the right things to help myself, but I just do not know what that is now.

 

The longest I have had to hold my dose in the past was about 3-4 weeks.  It has been 7 -1/2 weeks now with this situation.  I was getting some better and then this stuff started about 6-7 days ago.  Some of the worst sxs with the bad headaches and migraines had eased up for sure.    It does not help that I am scared because I have never been like this before - ever.  I just need some relief and not sure how to get it!

 

 

 

 

[[je...]]

I know some people had to hold for up to 3 months to feel better.  I know my 6 week hold was very discouraging as I thought I would get better in 2-3 weeks.  I know you're thinking about cutting but do you think holding longer could help? I know it sounds counter-intuitive when you're suffering,  I'm just thinking a little longer might do the trick?

[[to...]]

I know some people had to hold for up to 3 months to feel better.  I know my 6 week hold was very discouraging as I thought I would get better in 2-3 weeks.  I know you're thinking about cutting but do you think holding longer could help? I know it sounds counter-intuitive when you're suffering,  I'm just thinking a little longer might do the trick?

 

Hi jelly baby - I am not going to cut until after I see my doctor on Oct 3rd, unless he can see me sooner.  He is going to be checking alot with my bloodwork so I hope he will find what is going on with me.

 

This horrible 24 hour a day internal tremors is horrible.  My stomach hurts so bad and I just feel horrible.  I really hope that my doctor can help me, but I hate that is going to be another week and a half.  He is trying to get me in sooner.

 

I would not have an issue holding longer if I knew it was going to help.  Right now, I do not even know if this is WD or if it is the histamine as I read last night that a lot of my sxs can be from histamine.  Or even MCAS.  I have a lot of the sxs for MCAS but these symptoms also mimic benzo wd.  They also mimic Vit B deficiency.  It is all so strange how so much mimics benzo wd.  Who's to say what is what!  This is all just a guessing game.

 

I am just trying to hang in there!  Not doing well physically or emotionally!  What is so strange is that I am worse than I have ever been including when I was on the cold turkey 6 years ago.  This has me perplexed. 

 

I hope you are doing better too!!

 

Thanks! 

[[to...]]

I know some people had to hold for up to 3 months to feel better.  I know my 6 week hold was very discouraging as I thought I would get better in 2-3 weeks.  I know you're thinking about cutting but do you think holding longer could help? I know it sounds counter-intuitive when you're suffering,  I'm just thinking a little longer might do the trick?

 

I looked back at my calendar/journal and in February was when the histamine issues started, there was another issue that happened too when they painted outside, and the fumes got in and I had allergic reactions for 10 days straight.  Then the histamine issues started and have only gotten worse since then.  Right before that I was on .25mg a day and was doing ok.  I wonder if I go back to .25 mg a day and back to 4 doses a day, if it would help the histamine problem and help me to feel better.  I am willing to do whatever I have to at this point to feel better.  If I knew it would help, and I could get back to where I was then, maybe the histamine would get better and then I could go VERY slow tapering once I was stable.  I worry about malnutrition as I can not eat many foods and have lost 49 pounds (tried to part of it)

 

I am even thinking about going back to .50 and do 4 doses a day.  If I were to do that and the histamine issues got a lot better and I could eat again and not be so sick all the time I think it would be worth doing.  If I did that and got better and stable, I would stay there for a few months so I could actually enjoy life again and then start a very slow taper.

 

 

Any thoughts would be appreciated!!

[[je...]]

Just tell me again are you taking antihistamines?

 

 

[[to...]]

Just tell me again are you taking antihistamines?

 

I am taking benadryl but not every day as it does seem to work as well after a few days consecutive use. 

 

I tried pepcid but had side effects and had to stop it.

[[je...]]

Do you have other non-drowsy antihistamines that you can also rotate? Here in Australia we have fexofenadine, loratadine and cetirizine. I alternate between them.

 

Does it make enough of a difference in how you feel if you take it? I'm just trying to think of alternatives before updosing. Gosh, I would hate to see you updose and it also not work. 

[[to...]]

Do you have other non-drowsy antihistamines that you can also rotate? Here in Australia we have fexofenadine, loratadine and cetirizine. I alternate between them.

 

Does it make enough of a difference in how you feel if you take it? I'm just trying to think of alternatives before updosing. Gosh, I would hate to see you updose and it also not work. 

 

My issue is that I am so sensitive to so many meds, I cannot take much and the things I have tried I have either had allergic reactions to them or they give me bad side effects and I have to stop them.  The benadryl is something I have taken for years without issue, and I guess that is why I am still able to take it.  It does seem to help when I take the benadryl.

 

During this last 7-1/2 weeks, I have had to take a little extra dose of xanax about 4 times and it has seemed to help and that is why I am thinking that up dosing a little will help me.  I know there is no guarantee but I have to try something.  This hell I am living is too much to take.  Yesterday I woke up very early and started crying and had SI.  I just need relief.  I was like that for 3 hours and that is when I knew I had to try something. 

 

I read that you need to go up in dose the same way you go down, in stages, so my thinking is that if I do that, I may not have to go up much.  Maybe to .3125 mg.  That is a little above the dose I was at when I did not have all these histamine issues.  I have read a lot and found a thread here about people who have felt the need to updose.  I totally understand that it may not work but I am praying it will since doing the little, tiny doses have had benefit.  I just would not do them every day in the last several weeks because I did not want to make it a habit and my body get used to that.  Now I think it is worth trying to go up some.  I know I will lose ground, but I have already lost 4 months of progress due to the jump and reinstatement.  I also am praying for it to help because I am suffering so much, and I have been in a bad place since February!  In February is when I had cut to .25 and also when the histamine problems started.

 

My plan is to only go up to the lowest dose I can in hopes of getting some relief.  If it works, I will stay at that dose for a couple months to give my CNS a break and once I start to taper again, will go very slow.

 

I am also thinking of my husband who lives with this day in and day out!  It is so hard for me to see him so miserable because I am in such bad shape.  He is my rock and he has helped me so much.  This has been horrible for him too.  I want to feel better for myself, and it will also be beneficial for him.  Seeing the one person in your life (other than supportive BB friends) that loves and supports you hurting does not help with my anxiety either!

 

That is my thinking anyway ..... 

 

 

Thank you for your thoughts!  I appreciate you !! 

 

 

[[je...]]

It seems like you've given this a lot of thought and if the extra Xanax now and again is helping,  then maybe the updose could work. I hope you know I'm not against updosing, I do believe in it if can bring relief in misery.

 

I also don't think it's worth it to just continue suffering if you truly believe you have a way out. I think it's just about having peace about your decision.

 

Will be there whatever you choose to do.