The Long Hold Support Group

[[tr...]]

also if you can get liquid versions of vitamins or liquid caps. sometimes the fillers in the dry pills can cause some problems early on.

 

but yes def go low and slow, and only one at a time to test it out.

 

[Guest [fl...]]

Hi Ladies, it's been a while since I've been here. I was healing steadily and seeing lots of improvement, even had a few longer windows (I usually have a night window, but had a few afternoon windows).

 

Well, all that slammed shut one week before my period and I feel like I am actually getting worse. Panic attacks at night and new depression. I'm at 20 weeks and need some hope. I know that cold turkey was a bad idea, but I didn't know that at the time and didn't realize that I should reinstate. Now I am wondering if I should reinstate and start over. I just want to function again. My kids are growing up fast :-(

 

When people say - oh it will take a year or more, I cannot imagine being like this for another 7 months. Even if I weren't totally healed but just felt a bit better I could do it. Does it get better over time? I am at 5 months! I am just so discouraged I don't know what to do. My period ended yesterday and so I hoped today would be better but not so far...

[[Tr...]]

Fluffer, remember you have been having windows which means you are making progress and healing. When in a wave we completely forget all the progress we have been making and believe we will be on the wave forever but this is not true. This wave will pass and you will feel better again... I remember at 5 months I was still severely sick, so be patient with this process. I also wish I hadn’t cold turkeyed because the healing indeed is long and painful but sometimes, the only way out is through... Some people find relief by reinstating and others don’t, instead they kindle and make things worse. Answer if you will be able to handle it should you reinstate and kindle yourself? If you won’t be able to handle the risk of kindling then your best bet is to wait it out. It’s awful and unfair and it really sucks but it will slowly get better... you can do this Fluffer...

[[ki...]]

Fluffer, CT is hard, but I have seen many so slow tapers and still suffer. There’s no guarantees. I wouldn’t risk reinstating at this point. Waves are a sign of healing even though they SUCK. ❤️

[Guest [...]]

Oh Fluffer!

 

I'm so sorry that you're feeling terrible! I'm in a bad way too! I have every physical and mental symptom you can think of!

It's pretty bad, and I still am trying to taper off!

 

I don't want to comment on reinstating, sometimes it works, sometimes it doesn't. Apparently, you have to reinstate at double your original amount and then try and stabilize for a long time (sometimes months). Some people never do and still have to get off that.

 

My period is so awful, I'm literally bed bound the entire time, except when I have akathasia, it's awful!

I find that the estrogen causes more glutamate in my brain then, I literally feel crazy when I have my period.

I'm trying to eat less glutamate foods during that time etc.

 

I too worry about my kids, mine are almost 15 and 18, I've already lost almost a year with them and I expect many more to go.

That's what some of my desperate posts have been about, knowing that they maybe adults by the time I might be even remotely better.

All I can say, is that this is so unfair, but they love their mom and there will be many, many years with them.

 

hugs my friend!

 

 

 

[[se...]]

Oh Mary, I am so sorry.  I hope you are truly ok.. hugs

[Guest [fl...]]

WinnieDog, I’m sorry to hear of your suffering. My kids are 13 and 15 so I get it for sure. My period was so heinous too but also the week before and now even the day after. I just restarted low dose progesterone. I didn’t want to as it stopped my period last time but it’s already helping so much after just one hour! I took 6mg oral micronized. I will never stop it again. I had stopped it when my cycle stopped but now realize how much it helps. Anyway, just a thought! I’m praying for fast healing for us both. I have realized that I cannot have a do over for my mistaken cold turkey. I just have to heal from it the best I can. Hugs to you!

[Guest [...]]

at what time of the month do you take the progesterone?

I know you told me, but I can't remember.....typical.

 

I might be willing to try that, I'm so sensitive to everything....

 

My dr would give it to me, my prolactin is way too high as well, and my B12 is through the roof, but I don't even supplement.

This drug is messing with my entire endocrine system.

My thyroid is 0.54, so almost in the hyperthyroid!

I'm pretty frightened at what this drug is doing to me and I have years to go to get off.

 

 

 

[Guest [fl...]]

I take progesterone the whole cycle to smooth things out. I get 25mg capsules and split them into four. I take one tiny dose twice a day. It’s a baby dose because I’m super sensitive too. It helps a ton though.

 

I’m so sorry to hear about your endocrine disruption! Your taper will take years? I was thinking 5% reduction per week is 20 weeks, but is that too fast? I’m so sorry! I wish I had tapered though - I was in so much pain for the first 3.5 months. I almost reinstated then it went down. But I’m not at all functional yet. I keep hoping things will turn around. Improvements are so maddenly slow!

 

 

[[ki...]]

Fluffer, if Winnie is doing 5% of her current dose instead of the original dose it will take much longer than 20 weeks.

[Guest [...]]

Thanks Fluffer!!

 

I'll ask my dr for some progesterone.

 

Unfortunately Kitsun is correct, if I can do 5% a month, which is all I've been able to do, that will take me around 2 years and that might even be pushing it. I could have gotten away with a 20 week taper, if I had just tapered properly at the end of July, but I didn't, I came down to 0.5 in about 4 weeks, then went back up to 0.75 mg and was stable. But then I had the colonoscopy and told them no versed, but I was very uncomfortable and crying, so they gave me some, I haven't been the same since. Now I can hardly taper at all, i'm going down 0.001 everyday and that's hard. I have all the symptoms listed by Ashton, literally all of them!

 

The worst is the menstrual disruption, it is the worst pain, I've ever felt - and I had a baby at home by accident and the other was a c-section!!

 

Keep up the good work, I know that you will be fine, it might take a while, but I know you will be good!

 

Keep hugging the kids, they will be fine!!

 

Hugs everyone, Winnie

[[St...]]

Good morning LHSG hoping everyone has a better.

Morning Trishy how are you my lovely are you hanging in there?l am sorry you are dealing with this l wouldn't wish an ill child on my worst enemy.l really hope your son finds the strength to stop for good however he needs to do this for himself and no one else.How's the rest of the family?All good l hope.

  I am doing ok not much going on this end we have been in lockdown since boxing Day and will continue to be until April sometime.l am not going to say much about that as my language would get me removed from BB 😡😵🤦🥺.I will be getting the cast off in just over a week so woohoo 🎊🎉.The family are all doing well and the puppies are good so can't complain.l don't know when l will return to work it will depend on how mobile my wrist is l would imagine it won't be in the next month.

Well that's about it from this end just wanted you to know l am willing you on honey.Look after yourself and try not to worry too much.love you my lST X

Morning Lady Mary,Val,Troch, LWT Jasmine Bill, Seasalt Olive Ginger Scorpio,Free,NJ, Nova Miyu GP Meems Esperanza Intend Gilly Final and everyone here sending you my love and hoping all are doing well.Drop in when you can and let us know how you are getting on.lt would be lovely to hear from you.X

[[Tr...]]

Morning Stut,

 

Glad you're doing a lot better!

Just hold on, the lockdown is going to end ( or at least get less strict) soon. We're all in this same boat.

 

After a short wave over the weekend, yesterday was much better again. Crazy, right?

Anyway,  I 'm enjoying the lovely Spring weather we're having this week! Just wonderful. I hate the cold and wet wintertime.

 

Wishing you all the best!

 

Trochsetter

[[St...]]

Morning Stut,

 

Glad you're doing a lot better!

Just hold on, the lockdown is going to end ( or at least get less strict) soon. We're all in this same boat.

 

After a shirt wave over the weekend, yesterday was much better again. Crazy, right?

Anyway,  I 'm enjoying the lovely Spring weather we're having this week! Just wonderful. I hate the cold and wet wintertime.

 

Wishing you all the best!

 

Trochsetter

Morning Troch that is good news.Have to say l am definitely not a fan of the cold weather l am definitely a spring summer person.Today is wet and windy however the rest of the week is to be sunny so will get out for walks.The lockdown is definitely taking it's toll on everyone l really hope this is the last one but sadly l don't think so.We will get through this.You are doing so well Troch just take it a day at a time.lyX

[[Ma...]]

Oh Mary, I am so sorry.  I hope you are truly ok.. hugs

 

Thank you so much seasalt.  Things are much better for us. 

[[Ma...]]

I am sorry I missed ao many people wishing me well, only saw them just now.  I really appreciate everyone caring and checking in on me, thank you all so much.  So glad it's over!!  Love you guys!

Mary 🙋🏼🙋🏼🙋🏼😘😘😘😘🙏🙏🙏🙋🏼🙋🏼🙋🏼🙋🏼♥️😷

[Guest [fl...]]

I’m so sorry - that sounds so hard! Hang in there, you can do this! The menstrual stuff is awful - I’m not sure if that’s the cause of my wave or not, but it sure seems like it. Thanks for the encouraging words :-)

[[tr...]]

Winnie:

 

I have some thoughts....

 

Firstly I know you are desperate for relief - but I strongly caution you about taking progesterone or anything at this time. Lots of things go paradoxical during WD and make things worse, and you'll only have to taper off of that later too.

 

Secondly, doing only 5%/month...do you ever level out or are you in constant symptoms? some ppl go slower bc they actually balance out a bit between cuts. I'm just thinking if you're having no relief between cuts, you're going to feel the same whether you cut 5% or 10%/mth . I actually did your calculations tonight on paper to see where you come out doing either 5 or 10%.

 

If you level out with slower than by all means do that. But otherwise hell is hell whether its 5% or 10%..could you push through and get it over with sooner? 

Then the true healing can begin. I'm hope I do not sound unsympathetic - I'm just trying to be pragmatic about it bc I don't want to see you suffer longer than necessary.

 

 

[[Ni...]]

Hey everyone, I did a cold turkey for 4 days then reinstated 9 months ago of 1 mg of ativan and 7 mg of valium, ever since I've had neurological injury/tolerance to the benzos and they don't work as effective anymore. Now I'm on 12 mg of valium in the morning and 11 mg of valium in the evening and I suffer from physical anxiety everyday. I just made my cut from 12 mg to 11 mg last week Wednesday but before that imI also suffered from physical anxiety throughout the day. I am not stable but walks help. For how long should I hold to stabilize? Thank you.

[Guest [fl...]]

Hello ladies, I just wanted to post about this study on birth control pills and allopregnanolone: https://www.researchgate.net/publication/225063477_Long-term_administration_with_levonorgestrel_decreases_allopregnanolone_levels_and_alters_GABAA_receptor_subunit_expression_and_anxiety-like_behavior. This is a rodent study, so it was not a human study, but the results would be expected to be similar based on physiologic similarities. The study basically says that long-term use of birth control pills results in a dramatic reduction of allopregnanolone in the brain and an alteration in GABA receptors that can cause anxiety. This is important because allopregnanolone is our natural calming neurosteroid and is likely important for recovery of our brain and GABA system. This naturally declines as we age, such that younger people usually recover faster than older people (though this is not universal). However, birth control pills can cause a detrimental effect on this system. I would not provide medical advice, but if any of you are on these, consider your options. Tapering birth control pills is not very useful as it is an all or nothing treatment - either it stops ovulation or it doesn’t. The chemical hormones themselves are mostly just detrimental and tapering may not be helpful though I cannot say for sure. The progestin component is the largest contributing factor to the reduced allopregnanolone, as it suppresses natural progesterone formation. The other option rather than stopping the pill is to add natural oral micronized progesterone and titrate up to 40mg daily or less if anxiety is lowered sooner (the level required to restore allopregnanolone in post-menopausal women and likely women on birth control pills). Some people worry that progesterone is a GABA-ergic treatment or that it causes withdrawals. I have addressed this before, but this is not exactly true, though there is some validity. Progesterone is converted to allopregnanolone, which is our brain’s natural calming neurohormone. It is always present, does act on GABA receptors and generally speaking, higher is better. Progesterone does cause withdrawal - this is caused PMS, haha. Seriously, yes, it does but the body is designed to adjust quickly. The body produces copious amounts of progesterone during 9 months of pregnancy. It takes about 3 days to overcome progesterone withdrawal after 9 months. Progesterone can also be tapered. In fact, I taper progesterone for the last 3 days of my luteal phase and into my follicular phase to help with the natural withdrawal. I use 12.5mg nightly during the luteal phase starting with ovulation and 6mg during the follicular phase starting with menstruation. I hope this information helps someone! I am not on this forum much right now to give myself a break, but I will check in after a week if anyone would like to PM me with questions. Sending healing vibes to all!

 

[[tr...]]

The body produces copious amounts of progesterone during 9 months of pregnancy. It takes about 3 days to overcome progesterone withdrawal after 9 months.

 

Although I see the validity in what you posted I do not necessarily agree that it takes 3 days after the 9 months(post partum). I can assure you I was a bit of a mess for longer than that after both my children. I knew it was hormonal and powered through with help- it was more like a couple weeks. Other ppl it takes longer, which is so hard for them

 

I def have my concerns with birth control. Although I had no problems with mine back in the day, she has had not good outcomes twice now with trying some. I told her to let her body balance out and not take anything for now. 

 

 

[[ki...]]

Fluffer, that’s some interesting information you posted. I went on Nexplanon (progesterone-based BC implant) after my son was born in 2015 and had it removed in 2017. Got pregnant 2 months after going off and miscarried. My anxiety was through the roof after my pregnancy loss (it was also traumatic due to blood loss). I suspect the upset in the level of progesterone in my body was a huge factor.

[Guest [fl...]]

Trina, yes some women do take a long time to adjust to the drop in progesterone - I should have said the healthy system is designed to adjust in three days. However, stress, genetics and other factors alter this.

 

Kitsune, it definitely sounds like allopregnanolone may have been a factor after your birth control. I get upset when I think of what we all do to our bodies without realizing! I’m sorry for your loss - I had two kids and to miscarriages - so traumatic.

[[...]]

Hi everyone. I had Covid. I got it the second week of January and I'm only now feeling better. It was the worst sick I've ever been. I don't understand how some just get mild symptoms and others severe. I heard that it may depend on the viral load but i don't even know how I got it. I always wore a mask and used hand sanitizer. There are too many in our little town who even now refuse to where a mask.

[[Pa...]]

Hi everyone. I had Covid. I got it the second week of January and I'm only now feeling better. It was the worst sick I've ever been. I don't understand how some just get mild symptoms and others severe. I heard that it may depend on the viral load but i don't even know how I got it. I always wore a mask and used hand sanitizer. There are too many in our little town who even now refuse to where a mask.

 

I've wondered where you were Jwl, I'm sorry to hear how sick you've been but I'm very happy to see you again.