The Long Hold Support Group

[[...]]

Like you, Ginger, I've been holding for 2 years and am symptom free with the exception of occasional cog fog. We'll see what happens when I start tapering.

[[NJ...]]

I am sure this has been covered in this group but could you share your opinion on tolerance please. Could holding for an extended period of time put you back in tolerance and suffer more withdrawal because of it?

Thank you everyone!

 

I have been thinking a lot about this in recent weeks. I have been holding at .75 mg for two years ... my original dose pre-taper was 1 mg.

 

I realize that while I am doing mostly okay, I never really feel good. I continue to have a lot of nausea. I work out regularly and it seems I just can't push as much as I normally do. I still have one or two days a month where I am in bed all day with diarrhea and getting sick to my stomach for hours. Is it the benzo? Is it the mirtazapine I started to get off the benzo and now can't get off of that? Is it hormonal fluctuations from menopause? Do I actually have something wrong that we haven't discovered--I just booked an appointment with another GI but can't get in until October. I have no idea. I would like to feel GOOD. I am tired of not feeling well. I am not even sure I remember what it is like to mostly feel good it has been so long. I started tapering 5 years ago, got down in dose, then had to updose to get some sort of stability to deal with my son's health issues (he is finally doing a bit better by thee way!). I am not touching anything until he starts college in a year from now: I just wish I could get to a better place. I have started meditating again, I let that fall by the wayside when lockdown hit and I was never home alone anymore. My husband and son are both still at home all the time but I am trying to set some time aside every day.

 

Val, it is good to see you posting, hope you are doing well. Hope everyone else is staying safe.

 

NJ,  I can't speak for you but after a long hold of 6 months or more, I feel great, completely normal.  Some, however, never feel good on benzos or antidepressants, even small amounts.    Plus, you have been under enormous stress for years now, that alone can cause all the symptoms you listed. 

 

I do think it's worthwhile to have the symptoms checked out, at least you would know and if something was found, it could be treated.  I'm so sorry you are struggling for so long.  Have you tried an elimination diet too see if you're sensitive to gluten or some other food?  Just a thought. G

 

Ginger, Yes, have tried a bunch of elimination diets, low FODMAP, gluten free, vegetarian, vegan. The only thing that works is dairy free, I have a horrible reaction to dairy and some other foods (dairy).

 

Since I did really well for years on antidepressants and klonopin other than weight gain, i do suspect it is just a combination of very bad IBS and stress. I have meditated again the last two days and wow, what a difference. It's amazing, my tummy calmed right down. So maybe I just need a lot more self care to get to a better place. COVID of course is exacerbating the stress right now as well. Thanks for your insight.

[[tr...]]

So I'm late..I'm never late. But anxiety is up so who knows?

No period, no pre-cramping. No depression. Just a "busy" brain and anxiety.

 

Do I view this as good??? I'll keep you gals posted.

 

How are you kits: surviving?

 

Tallgolfer: you too..how are you?

[[ja...]]

Hi all,

A quick update.

I had a good day yesterday. Went down the kitchen  and dI'd some cleaning and cooking.  Took the kids to the park.

The nighttime panic attacks are abatting. And I don't think about death as much now, thanks to lexapro

Some symptoms remains,  prinkling on my skin that gives me anxiety thinking that it is permanent damage and dizziness. I have been sleeping 10 jours a day and been feeling extremely tired. My doc wants me to start slowly reducing the valium next week and give me a week for the lexapro to work. I think to say that the lexapro had cut my panic attacks in a half.

I haven't used a betablocker in a few days now.

I scared an worry . She said that she can prescribe liquide valium  for me. I don't do well.on that much amount of valium .

[[ja...]]

Jwl

How many  time did dose when you were at 9mg of valium

Do you take magnesium?

How much of Vit C do you take a day?

[[Tr...]]

Trina, I’m always a few days early or late... so I wouldn’t panic if I was you...

[[Ri...]]

Trina,

It took my period months to be normal again. I still have some mild upticks in symptoms but its barely anything compared to the beginning of recovery. My period was late and early and so on and I had an otherwise normal period my whole life before benzos.

[[Tr...]]

Hi everyone,

Haven't been on in a couple days I've been very busy. Kids came over for a pool day Saturday and Sunday Rich and I took off for the day shopping Today I was free from babysitting so I crafted all day My recent cut is going well. I had one crappy day on day 3 of the cut but then felt good. I had some chemical anxiety and just felt very tired and just not myself. Tomorrow makes a week since the cut so fingers crossed I won't get any lag time surprises.

 

Hey NJ,

Sorry about your nausea. I think giving yourself more self care can only benefit you. You have been under a lot of stress for a long time. Try to carve time out for just you everyday to relax and ground yourself. I hope things settle down for you and you find some calm. ❤️

 

Hey Jasmine,

That's good news! Sounds like Lexapro is really helping. I'm really glad for you that you're feeling better

 

Thinking of everyone here at the LHSG and hope everyone is doing ok.

 

Love to all,

Trishy ✌️❤️

 

[[Ma...]]

Trishy, fingers crossed girlfriend this cut goes really easy.  You are doing great so far.  Glad you had good time with the family and Rich spoiled you even more than you are  :laugh:

LY 🙋🏼🙋🏼🙋🏼.  🙏😘😷♥️🙏😘😷♥️🙏🙏🙏

[[Tr...]]

Trishy, fingers crossed girlfriend this cut goes really easy.  You are doing great so far.  Glad you had good time with the family and Rich spoiled you even more than you are  :laugh:

LY 🙋🏼🙋🏼🙋🏼.  🙏😘😷♥️🙏😘😷♥️🙏🙏🙏

Hey girl! Miss you! How are you doing? I hope Texas is still going down. I haven't watched the news in a few days. I just put on CNN to see what's going on. 😷 🙏🏻🙏🏻

 

I'm burning holes in Rich's wallet :laugh: I'm not done yet either, going shopping tomorrow with one of my sister's  

Love ya! 🙋‍♀️❤️❤️

[[Fr...]]

For anyone who has had to deal with POTs during this process what have you found most helpful. I am holding for now trying to get some of this under control. I eat probably 2000mg-3000mg of salt a day. Mostly just salting my food to taste. I read online recommended by doctors for POTs people is 8-10g a day. Has anyone found really pushing the salt helpful? It really just makes me uncomfortable hot, edgy and thirsty. I am having a hard time being able to get out of bed before 4pm or so unless it’s for food and bathroom then right back to laying down.

 

Hope everyone is doing well and hanging in there.

[[ki...]]

Trina, my period was pretty uneventful. Aches and pains mostly, one day of anxiety/broken sleep. Nothing compared to last month which felt like acute.

[[tr...]]

thanks ladies..I'm not panicking..just surprised a little...I will say agitation def kicked in later today... "rhymes with witch"... i need duct tape over my mouth so I don't say snarky things lol

 

Kits: this is encouraging that you sound to have less symptoms! Yay!

 

Riley and Trying: Thanks for normalizing things...seriously. Have a tube ligation so at least I know I'm not pregnant lol. Now THAT  would complicate things for sure...

 

 

[[Ta...]]

I;m late too.  I never got my period. I was supposed to start today.  hmmm

[[no...]]

Hi all  how many of you felt WORSE before you felt better when holding and how long for before it turned around for the better? I know we're all different but I just need some reassurance right now as I'm feeling like f-in hell 

 

 

                                                  Nova xxx  :smitten:

[[bo...]]

my forehead is braking up with pimples, which I don't usually have so many, is this  just bws or  are my hormones being messed up. also my period lasts longer spotting for more days...

anyone else?

 

[[Tr...]]

I also have pimples after my period which I never used to have before... and my period is heavier the first 2 days, but nothing I can’t handle.

[[Tr...]]

For anyone who has had to deal with POTs during this process what have you found most helpful. I am holding for now trying to get some of this under control. I eat probably 2000mg-3000mg of salt a day. Mostly just salting my food to taste. I read online recommended by doctors for POTs people is 8-10g a day. Has anyone found really pushing the salt helpful? It really just makes me uncomfortable hot, edgy and thirsty. I am having a hard time being able to get out of bed before 4pm or so unless it’s for food and bathroom then right back to laying down.

 

Hope everyone is doing well and hanging in there.

Hi Jen,

I have delt with Pots sxs. Last summer was a nightmare for me with pots sxs. I still have some mild ones but nothing compared to last summer.

I just add salt to my food and drink all day. Not necessarily water bc I hate it. But I do try to drink some water with a little cranberry juice to give it taste. There's nothing you can do for pots sxs accept to hold if you're tapering and push fluid and salt. Get up very slowly after sitting or lying down.

I developed pots either from tapering too fast for my body to handle or it could have been from a virus. I was diagnosed by a cardiologist. But it all happened after cutting too quickly and like I said possibly a virus bc I was very sick with bronchitis two months before pots showed up. As for me I think holding was what improved my pots sxs.

I haven't read your sig but if you're actively tapering right now I recommend stopping where you are and holding until your pots sxs abate. In the mean time continue with salt and water. Really push those fluids.

Trishy ❤️

[[Tr...]]

Hi all  how many of you felt WORSE before you felt better when holding and how long for before it turned around for the better? I know we're all different but I just need some reassurance right now as I'm feeling like f-in hell 

 

 

                                                  Nova xxx  :smitten:

Hi Nova,

I got worse before I got better. For me it took a few months. I would say 3 to 6 months of holding and then I was way better. I think it's the sneaky lag time of the cuts. They catch up to you and overwhelm you with sxs and that's why you feel worse before getting better.

:smitten:

[[tr...]]

Guess what showed up today?!!..... cancel the baby shower...lol

 

ok here's the thing....I usually have horrendous cramps by now and feel psychotic/depressed aka acute all over again...

 

BUT....so far I haven't lost my mind and cramps are mild? I mean other symptoms have ramped up a bit, but this is nothing compared to the past 5 months. So I'm going to hold my breath for 24 hrs before I reach a total consensus on this -

 

BUT ITS LOOKING LIKE THINGS HAVE CHANGED FOR THE BETTER!!

 

[[Fr...]]

For anyone who has had to deal with POTs during this process what have you found most helpful. I am holding for now trying to get some of this under control. I eat probably 2000mg-3000mg of salt a day. Mostly just salting my food to taste. I read online recommended by doctors for POTs people is 8-10g a day. Has anyone found really pushing the salt helpful? It really just makes me uncomfortable hot, edgy and thirsty. I am having a hard time being able to get out of bed before 4pm or so unless it’s for food and bathroom then right back to laying down.

 

Hope everyone is doing well and hanging in there.

Hi Jen,

I have delt with Pots sxs. Last summer was a nightmare for me with pots sxs. I still have some mild ones but nothing compared to last summer.

I just add salt to my food and drink all day. Not necessarily water bc I hate it. But I do try to drink some water with a little cranberry juice to give it taste. There's nothing you can do for pots sxs accept to hold if you're tapering and push fluid and salt. Get up very slowly after sitting or lying down.

I developed pots either from tapering too fast for my body to handle or it could have been from a virus. I was diagnosed by a cardiologist. But it all happened after cutting too quickly and like I said possibly a virus bc I was very sick with bronchitis two months before pots showed up. As for me I think holding was what improved my pots sxs.

I haven't read your sig but if you're actively tapering right now I recommend stopping where you are and holding until your pots sxs abate. In the mean time continue with salt and water. Really push those fluids.

Trishy ❤️

 

Thank you Trishy!

How much salt are you putting in your water? I put 1/4 tsp in one cup of water before dinner last night around 7pm and I was able to sleep the night without the adrenaline at 3-4am.  Maybe it was a coincidence I am not sure. I was able to rest all day and eat plenty. That always helps me, but I really want to be able to get out of this bed more often. I felt like cement yesterday and could hardly move until after 5 in the evening. I have been actively tapering and it was going well until spring this year. Perhaps I should have held sooner. I have been dealing with pots for a few years but not as bad as right now.

 

The salt really made me more thirsty. Do you put salt in every you drink?

[[ja...]]

For anyone who has had to deal with POTs during this process what have you found most helpful. I am holding for now trying to get some of this under control. I eat probably 2000mg-3000mg of salt a day. Mostly just salting my food to taste. I read online recommended by doctors for POTs people is 8-10g a day. Has anyone found really pushing the salt helpful? It really just makes me uncomfortable hot, edgy and thirsty. I am having a hard time being able to get out of bed before 4pm or so unless it’s for food and bathroom then right back to laying down.

 

Hope everyone is doing well and hanging in there.

 

What is pots?

I can't get put of bed as well. Feel very tired and dizzy. By Bproviding is 100/70. Heart rate is 55.

[[Fr...]]

For anyone who has had to deal with POTs during this process what have you found most helpful. I am holding for now trying to get some of this under control. I eat probably 2000mg-3000mg of salt a day. Mostly just salting my food to taste. I read online recommended by doctors for POTs people is 8-10g a day. Has anyone found really pushing the salt helpful? It really just makes me uncomfortable hot, edgy and thirsty. I am having a hard time being able to get out of bed before 4pm or so unless it’s for food and bathroom then right back to laying down.

 

Hope everyone is doing well and hanging in there.

 

What is pots?

I can't get put of bed as well. Feel very tired and dizzy. By Bproviding is 100/70. Heart rate is 55.

 

It typical when you heart rate rises very high when you stand up. For me even sitting up my heart rate rising very high and I sweat.

[[ki...]]

Trina, that’s great news!! Maybe we’ll all be spared this month (and hopefully every month after). 🤞🏻

[[Ol...]]

Hi all  how many of you felt WORSE before you felt better when holding and how long for before it turned around for the better? I know we're all different but I just need some reassurance right now as I'm feeling like f-in hell 

 

 

                                                  Nova xxx  :smitten:

A

 

Aw Nova, I'm sorry you are feeling bad. You just never know. I have had times where I cut and felt like crap for months, and other times when I hardly felt the cut. It is so inconsistent! Hang in there!