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Julia I am so sorry you are suffering si badly.  I hope the ENT can help you!  I can't offer much but I want you to know that I am praying for you and all of us here on BB.  One thing my husband has sciatica really bad he has tried just about everything...the one thing that does help him is a good massage he does an hour and a half.  Sending hugs!

 

 

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Julia,

 

I am so sorry that things have gotten so bad!  What the hell is it about the dreaded "under 1 milligram" syndrome?  UGH!  It truly does suck! As you know, that's exactly where I hit a wall a year or so ago.  But I kept going and ended up in a bad place!  Anyway... enough about me.

 

Okay, so I looked at your signature....

 

Your reductions seem to be as follows:

9/6:    .1375

9/20:  .0625

10/4:  .125

11/8:  .125

1/24:  .625 (is this where you ran into problems?)

2/7:    .0625

 

I would tend to believe that these reductions are becoming too large.  As we've been told far too often, once we get at the final leg of a long taper, the last milligram is a bear!  Every little reduction is going to be felt - especially if we've had a rough go and have been on this long term. 

 

My suggestion would be one of two things. 

1) Just stay at your current dose for a good month or so and see if things level out.

2) Go back to the dose where you felt most "okay" and hold there for two weeks and then keep going but at a much slower pace.

 

I know that none of us like to updose.  It sucks.  But a minor updose to a point of stabilization can most definitly help.  What I learned from my own mistakes is that continuing to make reductions after going too fast is a disaster!  I don't want to see you ending up like me and having to go back up to an even higher dose and starting again.  Heck, if I had just slowed down I'd be off of this by now!  (I have to go back and read your signature to see where you were before the larger reductions.

 

Also, the crying?  BEEN THERE! For some reason the emotional part goes hand-in-hand with the larger dose cuts for me.  You honestly can't make this stuff up! 

 

I did get your private message earlier but have not had time to respond.  I'll try to check in with you directly this evening.  I'm just so sorry that you're going through such a rough time.  But if you're feeling this poorly, please don't even consider making another cut.  Try to get yourself stable first.  Julia, you've been doing GREAT for YEARS now.  Let's get through this last milligram.. even if we have to go at a darn snails pace!  As we've discussed, there's no rush.  I know how desperately you want to be off of this (as do I), but we must find a way to not make this pure torture.  We've come too far!!!!

 

We know that there's nothing physcially wrong with you.  That's a bonus!  The ER trip sucked but it was worth it to find that you're fine! I had a lot of ear pain, issues earlier on in my taper that have subsided.  It's crazy how symptoms come and go and new ones show up without warning or reason.  It's part of the process. 

 

Again, I'll check in later.  Sending hugs!

 

Love,

Lori

 

PS:  In a two month period of time (September to early November) you cut a whole .25 milligrams which could have been too much!In the beginning of your taper you were cutting that much out, or less, in a full month which was a smaller percentage back then.  Now, at under 1 milligram it's a MUCH bigger percentage.  It's hard to recover from big cuts. 

 

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Thanks Lori, agree with everything. I quit "bumping" d1. So, one down. I will keep cutting the bumps.  When I stopped all of them, it ws a really bad day. As I said somewhere back there, I need to taper off the bumps.

 

Once I get off of them, and stabilize, I will either try 4 doses again, or cut the  2.75 doses. Have learned to cut one dose at a time.

 

I am tapering seroquel a bit aggressively. Goal is not to get rid of it (I wouldn't sleep,) but get it way down. That taper is not giving me problems, shockingly.

 

Burned my dominant hand, badly, so it's hard to type. Will not be as active until it starts to heal.

 

Thank you for all the thought you put into this. I do take it very seriously.

 

So sorry for your hand injury!  Ugh!  That had to be extremely painful!  Hope it heals quickly!

 

As far as the taper, while cutting out any dose (bumps) or tapering scheduled doses is still a reduction in the right direction, I honestly don't see how you're going to be able to taper Xanax by only taking 3 doses per day especially when you get lower in your dose.  Trust me, once you get below 4 milligrams or so, dosing only 3 times per day is going to be EXTREMELY difficult.  It's most likely best to get your body accustomed to the 4 daily doses now than later. I'm glad that you're going to give it a try!  :thumbsup:

 

Personally, that would be my main focus right now (4 doses) doses rather than focusing on eliminating "bumps".  The whole idea of my post was for you to try to get your body to a point where you have some consistency of dosing that allow serum levels in your body to remain stable which can help alleviate constant interdose withdrawl. 

 

I'm simply speaking from my experience with many other buddies who have successfully completed a dry cut Xanax taper.  None dosed less than 4 times per day.  Something to continue to consider.

 

Again, so sorry about your hand!  Hope you're feeling better soon!

 

Fondly,

Lori

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Julia I am so sorry you are suffering si badly.  I hope the ENT can help you!  I can't offer much but I want you to know that I am praying for you and all of us here on BB.  One thing my husband has sciatica really bad he has tried just about everything...the one thing that does help him is a good massage he does an hour and a half.  Sending hugs!

 

Thank you so much for your kind words.  I will look into the massage.  Most of the time it is worst at night - I am guessing because that is when I am tossing and turning because I can not sleep sometimes.

 

Take care and I appreciate the prayers!  I pray for you as well.

 

Julia  :smitten:

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Julia,

 

I am so sorry that things have gotten so bad!  What the hell is it about the dreaded "under 1 milligram" syndrome?  UGH!  It truly does suck! As you know, that's exactly where I hit a wall a year or so ago.  But I kept going and ended up in a bad place!  Anyway... enough about me.

 

Okay, so I looked at your signature....

 

Your reductions seem to be as follows:

9/6:    .1375

9/20:  .0625

10/4:  .125

11/8:  .125

1/24:  .625 (is this where you ran into problems?)

2/7:    .0625

 

I would tend to believe that these reductions are becoming too large.  As we've been told far too often, once we get at the final leg of a long taper, the last milligram is a bear!  Every little reduction is going to be felt - especially if we've had a rough go and have been on this long term. 

 

My suggestion would be one of two things. 

1) Just stay at your current dose for a good month or so and see if things level out.

2) Go back to the dose where you felt most "okay" and hold there for two weeks and then keep going but at a much slower pace.

 

I know that none of us like to updose.  It sucks.  But a minor updose to a point of stabilization can most definitly help.  What I learned from my own mistakes is that continuing to make reductions after going too fast is a disaster!  I don't want to see you ending up like me and having to go back up to an even higher dose and starting again.  Heck, if I had just slowed down I'd be off of this by now!  (I have to go back and read your signature to see where you were before the larger reductions.

 

Also, the crying?  BEEN THERE! For some reason the emotional part goes hand-in-hand with the larger dose cuts for me.  You honestly can't make this stuff up!  -------------- :smitten: :smitten: :smitten:  OMG - for real - AND Dave hates to see me cry and I try not to but I have NO control. 

 

I did get your private message earlier but have not had time to respond.  I'll try to check in with you directly this evening.  I'm just so sorry that you're going through such a rough time.  But if you're feeling this poorly, please don't even consider making another cut.  Try to get yourself stable first.  Julia, you've been doing GREAT for YEARS now.  Let's get through this last milligram.. even if we have to go at a darn snails pace!  As we've discussed, there's no rush.  I know how desperately you want to be off of this (as do I), but we must find a way to not make this pure torture.  We've come too far!!!!  Thank you Lori - I sometimes forget that !  I do not know what I would do without you!  You have been with me from the beginning of my taper and the first person to help me - you have a very special place in my heart!!! :smitten:

 

We know that there's nothing physcially wrong with you.  That's a bonus!  The ER trip sucked but it was worth it to find that you're fine! I had a lot of ear pain, issues earlier on in my taper that have subsided.  It's crazy how symptoms come and go and new ones show up without warning or reason.  It's part of the process. 

 

Again, I'll check in later.  Sending hugs!    :angel: :angel: :angel: :angel: :smitten: :smitten:

 

Love,

Lori

 

PS:  In a two month period of time (September to early November) you cut a whole .25 milligrams which could have been too much!In the beginning of your taper you were cutting that much out, or less, in a full month which was a smaller percentage back then.  Now, at under 1 milligram it's a MUCH bigger percentage.  It's hard to recover from big cuts. Totally agree - I did not realize that!  .25 is way too much at this stage.  And you are right - it is REALLY HARD to recover from big cuts!!  At least now I know what is going on - That helps me so much!  You're being here and having been down this road and sharing this with me is invaluable!  Goes back to long term high dose - it sucks!!!!

Hi Lori - Thanks for replying - I appreciate it.  I also want to thank you for checking on me the last several weeks to see how I am doing.  I have not been on BB for a while as I have just not felt like it and I hate to be negative but I need people to understand this crap can and does and will kick your butt to the point of making you do things and think things you would not normally do or think!  I have had the hardest few months.  It is like it was almost, when I was cold turkey'd off xanax and did not know what  was happening to me and thinking I was dying for over 5 months.  Hell - it was pure hell!!!

 

Anyway - I did look back recently and figured that my last cuts were too big but today - my friend - I calculated it out and this is what happened-

07/18/20    1.0

09/06/20    .9375 

09/20/20    .875

10/04/20    .8125

11/08/20    .6875            This is where I accidentally did a double cut (.125 instead of .0625)  It was a 15% cut - WOW - that explains alot.  Then I stayed there for over 2 months - going through hell.

01/24/21    .625              Then I cut again after 2 months to this .625 which is a 9% cut - still too much. 

02/07/21    .5625          Started feeling better so -  15 days from last cut - I made this cut - 10% - It hit me in less than a week and I finally went back up  to .625  21 days later and am still at this dose.

02/28/21    .625 had to go back up/ cuts too big

Have been on .625 for 22 days  today and am still having problems.  I will be staying here for a while.  I have to get better!!!

 

So you are exactly right - the cuts were too big - the 15% one that I did accidentally- after 6 days I figured out I had done a double cut but it was already 6 days so I thought - well I will stay on this and see how I do.  I should have changed the dose to the one I had meant to cut to and I probably would not be where I am not.

 

I am not sure what I am going to do right now - I need relief but I also hate to go back up in dose.  I am going to decide what I need to do and do whatever that is.  I am so mad I screwed myself up.  I would have been almost off this f n drug if I had not done this.  But - I am going to try to not beat myself up as that will not do any good.  I have still come down in dose from the beginning 83% and that is really good.  It has been hard at times but this last few months beat my ass!  Sorry - but that is the only way I can put it.

 

Going forward I will make sure to make smaller cuts.  Hopefully when I get better - I can make smaller cuts and make them more often.

 

I love you girl - thanks for the input!  Will talk to you soon I do hope.

 

Love, Julia  Hugs back at you!!!

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Julia,

 

hang in there!!  You will stabilize and get off this stuff sooner than you think.  I would try to avoid up dosing if you can stand it.  Your body is adjusting, try to get as much rest as possible!

 

Hugs

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Julia,

 

hang in there!!  You will stabilize and get off this stuff sooner than you think.  I would try to avoid up dosing if you can stand it.  Your body is adjusting, try to get as much rest as possible!

 

Hugs

Thanks Seasalt,

I appreciate it, I am not going to up dose at this point.  I am going to try to hang in there.  It has been so hard lately.  I get so frustrated because there is always something coming at me with this taper.  It is literally the hardest thing I have ever had to do.  I know I have come a long way from where I started, 3.5-4 mg  a day but I had no idea it would so hard or take so darn long. 

I know I will succeed.  I will not quit.  I just want to be able to function and be able to live life while I am doing it.

I pray for the day when I do not have to think about how much I am supposed to take today and how many doses and what time to take them.  It consumes our lives.  I can't wait for this horror to be over.

 

Take care and thanks for the encouragement.

 

How are you doing?

 

Hugs,

Julia  :smitten:

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Julia,

 

I feel the same, it will be two years plus to get off .5mg, so consider how far you have come!  You are doing great, let you body adjust, get stronger and start again, it’s all you can do.  Me too..

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Julia,

 

I feel the same, it will be two years plus to get off .5mg, so consider how far you have come!  You are doing great, let you body adjust, get stronger and start again, it’s all you can do.  Me too..

 

What is your dose now?  How long were you on xanax before you started tapering?  If you do not mind me asking...

 

It is hard !!!!!! One thing for sure is no one can call us weak because tapering off this poison is hard as hell and not for the faint of heart!  This is one of those - will power does not do it - it is too complicated and this drug controls everything in your brain.

 

:smitten:

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Julia, I was only on 3 months before I started tapering.  For the first eihjt months I could only dose down 2 percent per month.  I was unaware at that time I was suffering an autoimmune flare.  I found out a couple of months ago that I have Hashimoto’s disease.  The symptoms mimic withdrawal.  Once healed I have been able to dose down about 20 percent of my dose per month.  I am assuming at this pace I will be done in December or January.
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Seasalt, you are doing so good! Hope you are well! I’m almost halfway and hit a big wave so am holding. I admire you all so much. You are such strong people.  :smitten:
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Julia, I was only on 3 months before I started tapering.  For the first eihjt months I could only dose down 2 percent per month.  I was unaware at that time I was suffering an autoimmune flare.  I found out a couple of months ago that I have Hashimoto’s disease.  The symptoms mimic withdrawal.  Once healed I have been able to dose down about 20 percent of my dose per month.  I am assuming at this pace I will be done in December or January.

 

Seasalt, this post just sparked my interest!  I'm seeing an Endrocinologist next month for what they think could be Hashimoto's.  I'm genuinely curious as to what your symptoms were. 

 

Autoimmune disease runs in my family as well as thyroid issues. My mom had and overactive thyroid that then went to underactive.  It's since been removed. Same with my grandmother and great grandmother as well as paternal grandmother!  My mom also has Lupus and Rhemotoid arthritis.  My sister has celiac's.  The list goes on.  However, in blood work, only my TPOab's are elevated.  All other Thyroid markers were within the normal range.  However, I have read that with Hashimoto's often the blood work is "normal" because it's an autoimmune disease that "attacks" the thyroid but the thyroid can still "appear" to be functioning.  I'm curious as to how yours was officially diagnosed.  Was it through specific blood work or a combination of symptoms and blood work?

 

I have just about every symptom for 3 years now (probably longer looking back) have been seriously questioning if this could be Hashimoto's and not just the taper. 

 

During the summer of 2018 and 2019 I was down to 89 lbs! Normal weight for me is 104 (I'm very petite)  It was insane!  I kept eating, and eating, and eating and I couldn't put on a single pound.  I was terrified that I had cancer!  Fast forward to the past 18 months (prior to the pandemic) and I gained almost 30 pounds and I stopped eating like that!  In January, out of desperation, I decided to eat only 700-800 calories per day  as a test becasue this was so foreign to me (I know, not healthy) but I did not lost a single pound!  Keep in mind that my weight had been exactly the same since I was 20!  I'm 53. I literally can't fit into ANY of my clothes!  It's bizarre. Doctors want to cross it off to age but realistically since I'm still getting my period, this amount of weight would not come on so suddenly (let alone the weight loss only a year or so prior)

 

This is not the worst of my symptoms...

 

weight gain

Fatigue... I mean often can't keep my head up!

Terrible muscle pain and stiffness - everywhere!  Not like it would be with arthritis. 

Insane constipation

Hair falling out everywhere!

Eyes are constantly dry and scratchy (I've been tested for Sjogren's syndrome - it was negative

Skin is soooo dry!

memory issues

 

I'm sure I've forgotten something.  I'm genuinly curious as to what your symptoms were/are.  And were you given synthroid?  If so, did it help?

 

I have a script for an ultrasound of my thyroid and I'm waiting another week to have it done. (One more week before full immunity from my second dose of the vaccine).

 

Any information you could provide as to how your diagnosis came to be would be more than appreciated!!! 

 

Thanks!

 

Fondly,

Lori

 

 

 

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Lori,

 

When I became ill, I lost 30 pounds over three months. I began having spells of being dizzy and thought I might have a seizure (even though I have never experienced one).  I was also weak, had my first ever panic attack and was getting muscle spasms in my feet at night.  I also began having heart palpitations.  The doctors had no idea what was causing all this and suspected a pheochromocytoma. 

 

That is when they put me on the benzo to stop the attacks, however they never found a pheochromocytoma.  I then saw an endocrinologist at John Hopkins, he told  me it was a severe case of menopause and that I had no estrogen in my body.  I told him I was on the Xanax and needed to dose off and he told me the estrogen would increase the effects of the drug and to discuss this with my primary doctor.  I did, and she could tell me how much to decrease the dose which led me to BB.  I tried to cut the dose by 1/4th and I felt like I would die (honestly).  My gut was telling me if I took the estrogen I would regret it, so I did not begin HRT.

 

At that point I was determined to get off the Xanax so I could figure out what was going on and begin to heal.  I decided to dose down at 2.5% per week but I could not handle the extreme side effects I was having, so I began 2.5% per month and I was struggling to even do that.  I began reading the causes of of weakness and realized I could be low in B12. I asked my doctor to check my levels, she found I was so depleted that I need injections.  I began supplementing and over the next few months my strength gradually came back.  I also looked at my medical records and compared them to past years and discovered my TSH levels were fluctuating wildly.

 

I asked that my TSH be tested again and to also test for Hashimoto's.  This is because the weight was coming back regardless of how little I was eating.  She said it was menopause, but my 32 year old daughter went from weighing 95lbs to 140lbs in three months as well. (She has the same doctor).  When I told the doctor this,  she agreed to have us both tested.  We both have TSH levels within normal range, but tested positive for the antibody that signals Hashimoto's disease.  Because we are within normal range at the moment (due to a very restrictive diet),  we do not require medication.  They did however order an ultra sound on both of us.  I have a small nodule on my thyroid (5mm)  and my daughter does not.  They are simply having me retest in 12 months.

 

As for symptoms, I am struggling with inflammation, weak wrists, sweating, cold spells, hot flashes, dizzy spells, dry hair, hair loss, dry skin especially on my heels and lots of new nevi/nodules on my legs and currently weight gain, anxiety etc.  I have no idea how much is the Hashimoto's and how much is withdrawal.  I know my body can not with stand much more so I am taking things very slow. 

 

I feel like I need to get off this drug and then focus on the immune response I am having. I suspect I have some form of arthritis and maybe one additional autoimmune disease as it is typical to have two.  I have not gotten that far yet as they do not see the need to test me at this point.

 

I have continued with a restricted diet of no grains, only eggs for dairy and mostly fruits and vegetables daily.  I am hoping to be off Xanax in December and work through things from there.  I feel like I am deficient in vitamins/minerals but I have no idea so I am just eating as healthy as possible.

 

I hope you can get the test and it eases your mind. I believe I was experiencing thyroiditis when I had the initial attack. Unfortunately the doctors did not catch this, I am not sure why. 

 

I hope you get the test and you can do what needs to be done if you indeed have this.  Best of luck Lori..

 

 

 

 

 

 

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Dear Seasalt,

 

Wow, Wow, Wow!  Reading your post was genuinely heartbreaking.  I’m stunned that you’re going though all of this with a Xanax taper due to what could have very possibly been a thyroid or autoimmune issue all along.  It sounds like you’ve been through the proverbial “ringer” over the past year. 

 

Thank you so much for taking the time to write all of this.  My situation (thyroid symptoms) mirror yours (and your daughters) in many ways. Ironically, my own mother started with what she thought were severe panic attacks back in her early 40’s only to find out that after many years of incorrect assumptions on the part of several doctors, it turned out to be an undiagnosed thyroid issue all along.  Once they put her on Synthroid, the anxiety and panic attacks were nonexistent, weight evened out, and other physical symptoms dissipated.  Fortunately, she was never routinely medicated with a benzodiazepine, but it certainly left her with residual cognitive/behavioral issues for a year or so from being hardwired to believe she suffered from anxiety. 

 

I ultimately “interviewed” several local doctors (I’m in the suburban Philadelphia area) over the past two months and settled on one who looks at the “big picture” of symptoms not just lab results.  I’ve done a substantial amount of research that supports possible medication for those who are symptomatic but have relatively normal lab results.  What I have learned is that having higher values of TPO antibodies alone is often indicative of Hashimoto’s.  Due to the fact that Hashimoto’s is an autoimmune disease and not a direct malfunction of the thyroid, often times in the early stages, the thyroid serum levels can remain within a normal range because the thyroid itself is functioning. 

 

My appointment isn’t until May 3rd – 3 months wait!  I promise to keep you posted on what transpires.  At this point I’m not sure whether to be concerned or to celebrate if it turns out that it’s Hashimoto’s.  But it would certainly explain why I hit such a wall with my taper.

 

Again, I am so incredibly sorry that you’ve had to go through such an ordeal… let alone being prescribed Xanax when it wasn’t needed.  That alone is crushing. 

 

Thanks so much for taking the time to tell your story!  I’ll keep you posted on how I make out at my doctors’ appointment… and please keep me posted on your recovery as well! 

 

Sending you support and well wishes!

 

Fondly,

Lori

 

PS: Here’s a quick link to just one of 20+ articles I’ve reviewed....

 

 

https://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-7-issue-9/vol-7-issue-9-p-10-11/

 

 

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Lori,

 

Thank you for the additional information.  Ironically you and I are the same age going through similar situations.  I am more angry that I had to navigate my own care and honestly diagnose myself based on research of the symptoms.  In the multiple times I ended up in the ER they never once did a complete thyroid panel which included the antibody.  It would have been found and I would have recovered. 

 

This may just be me, but when you go to the ER and they can not figure out what is causing symptoms, I think a complete vitamin/mineral test should be done.  Second all your hormones should be checked (especially if you are a woman a pre/post menopausal age).  That just seems like common sense to me. Instead, I had to undergo countless testing for months which in turn complicated my symptoms and prolonged suffering.

 

The only blessing is that my daughter was diagnosed early.  With modification of our diets it seems to have helped, but I fear the Xanax maybe masking potential side effects from the disease.  Honestly I am afraid once off completely, that the inflammation may be worse, but I am trying to stay positive.

 

Please, please, please let me know what you find out.  I hope any one else with similar symptoms finds this post helpful and will request simple blood work to rule it out.

 

Thanks again Lori!

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Hi Seasalt and Lori,

I am so sorry you both are going through so much.

 

Seasalt - I agree that the ER should do those tests- if they did - in my opinion- a lot less people would be  given benzos and told it is anxiety.  I am so sorry you have had such a hard time.  I totally understand being angry about having to self diagnose by researching the internet.  That is how after 5 months of hell, I found out I was in major benzo withdrawal from being abruptly taken off xanax.  I was so sick and also lost 30 pounds - in about 5-6 weeks and then was the first time I had ever had a panic attack.  Once they started - I had them every day, multiple times a day.  I thought I was going to die multiple times.  It is strange as I do not have a thyroid problem - that I know of - but I do have fibromyalgia and mild rheumatoid arthritis. I also have severe arthritis in my neck.  I had this before the xanax came into play.  I also have arthritis in my lower back, in my knees and arms.    I actually have some of the same symptoms that you and Lori have.  I too wonder sometimes is what I am dealing with all benzo WD or if it is a combination of things.  Right now I am like you in that all I want to do is get off this drug and then we will see how it goes.  I already do have inflammation that is getting worse the lower in dose I go but I am not sure if that is the RA or what.

 

Seasalt - I am very glad your daughter found out early too.

 

I hope the both of you get some resolution and feel better.  My thoughts and prayers are with you.

 

Love and hugs,

Julia

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Julia, I was only on 3 months before I started tapering.  For the first eihjt months I could only dose down 2 percent per month.  I was unaware at that time I was suffering an autoimmune flare.  I found out a couple of months ago that I have Hashimoto’s disease.  The symptoms mimic withdrawal.  Once healed I have been able to dose down about 20 percent of my dose per month.  I am assuming at this pace I will be done in December or January.

 

Wow - you have been through alot.  I hope the rest of your taper goes well.  Sounds like you have a good handle on your taper and that is great, especially when you have other things going on.

 

Please take care.

 

Julia    :smitten:

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Julia, I made a mistake in that post, I am dosing down 10 percent per month (not 20), I need my readers!!

 

I hope you are ok and making progress, I am not going to dwell on the past.  I am taking a slow stroll to the finish line...

 

 

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Julia, I made a mistake in that post, I am dosing down 10 percent per month (not 20), I need my readers!!

 

I hope you are ok and making progress, I am not going to dwell on the past.  I am taking a slow stroll to the finish line...

Hi Seasalt, no problem, best to go slow and steady.  You have a good attitude and that helps alot.  I am a little better.  The dizziness is not as bad thank goodness.  I am going to hold her for a couple to three weeks and see how I am then.

I get my second dose of the vaccine next Tuesday and I am going to wait until that is behind me before moving forward with the taper.  I just want to feel better and then enjoy that for a while.

 

Take care.

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