The Long Hold Support Group

[[Buddie]]

Hi girls just posting this for Bess…. She’s locked out of her account needs some advice

Thanks.  If you could please ask if anyone has had any success with Hormones for perimenppsuse - that I accidentally hit my head & since then have had my period every 2 weeks for 2 weeks & before my period & during [...] a whole new kind of hell. Which HRT not to touch & which ones have people had better experiences on - thank you so so much -

Any advice for her re hormones?

[[Buddie]]

Hey everyone

I just wondered if anyone had an opinion on my situation

I tapered off 3mg of [...] and that ended in 2019. Looking back I may have gone a bit quickly but kept going as was very much caught in this mindset of must [...] off to heal. I hear so many learning the hard way that this isn’t really the way to [...].

Anyway, I’ve made a LOT of changes since finishing my
Taper with a progestogen med birth control. I’ve gone up and down so many times as every time
I cut, I got worse so I’d [...] back up. Then I’d try again as I would worry the pill [...] hitting my GABA a receptors.

Anyway things got really bad for me January this year. I hit a “crash” where I have never been before in my entire withdrawal. I suddenly lost any little function I had and my days have been spent in my bed hanging on for dear life. This [...] like nothing I have ever experienced before. I thought my taper was bad but it was nothing like this. I got regular breaks in my taper. This [...] constant relentless torture.

I’ve been doing a lot of reading and reflecting the past few months and feel I have basically destabilised my CNS by all the constant changes I’ve made.

I am on a reduced dose of my birth control pill but am worried about the hormone not being evenly distributed however I tried to cross to grinding the pill and had an immediate adverse reaction. My CNS [...] now so so sensitive I cannot even explain.
I now have to wear a medical grade mask to protect me from all chemicals and virus’. I can’t even tolerate a sniff of fabric conditioner as it makes my symptoms much worse. I am completely bedridden with severe dysautonomia. I also have what I call the hard hitters akathisia terror etc.

So I am now looking to do a very long hold. I have considered updosing to my full dose of birth control however this med has never been good for me and actually started my [...] towards benzos as I had an adverse reaction the year I started it. Some people are telling me
To push through and [...] off as I am adverse to the drug however every time I make the smallest of reductions, my last one was 2%, I [...] into a hell quite frankly I don’t feel I can endure anymore. I actually don’t think many have reached this severity. I have been insanely sensitive to these drugs and it’s time I give my CNS a proper break.

My only concern [...] how can I ensure I am getting the same
Dose of birth control every day? Can I still stabilise by shaving and filing or am I kindling by not getting consistent dose? I just want to be able to not make ANY changes for a considerable amount of time now.
I am currently using a very expensive lab grade scale that measures to 0.0001g which [...] making this easier to be more accurate however I am filing the pill with a metal nail file and it has a film coating on the outside. I have come down from 0.063 to 0.049g so I don’t really
Want to [...] all the way back up if I can help it as I feel I do need to be off this drug to heal completely. Plus all the side effects of birth control are not good for ones health. I won’t [...] into that now.
Can I still stabilise by filing and shaving the tablet?

I am
So grateful to be on this board and [...] someone has some thoughts on this.
I’ve essentially spent 2 years since my [...] taper moving up and
Down on a GABA hormone drug which has been completely
The opposite of stabilising. I have so many regrets and now understand this process so much more than I did at the beginning.
It’s been so bad at times I’ve even considered reinstating a drug as I truly
Felt I could not [...] on. But I don’t want to do this if I can help it as I don’t want to end up back at the beginning. However survival and safety [...] more important to me at this time. I am only a young woman with so much life ahead of me and I can’t let them win and take my life.

I feel if I taper further I am going to end up dead or in hospital. Things have truly gotten that bad.

[...] it possible things will improve if I don’t updose but continue to hold and wait it out?

Thank you everyone


Edit: Content

[[Buddie]]

I read your post and I am really[...] your pain.  I remember when this nightmare started I knew the only way to [...] through was to avoid any all other medications.  I was having reactions to everything I took.

I saw an endocrinologist at John Hopkins that wanted me to start estrogen/progesterone as I had a rare case of menopause where my body had no detectable estrogen.  He mentioned that I would have to adjust the benzodiazepine down, but could not tell me how much.  I inquired with my primary doctor and functional doctor and no one knew.   That set off an alarm for me.  I opted out of taking anything until I came off the benzodiazepine.  I believe this saved me a lot of unnecessary suffering.

My best advice would definitely be to hold.  Hold until you feel completely stable…it may be a while.

My heart goes out to you.  It [...] such a nightmare trying to navigate these drugs on your own and it’s disturbing how they  impact everyone so differently.

Best of luck..

[[Buddie]]

I read your post and I am really[...] your pain.  I remember when this nightmare started I knew the only way to [...] through was to avoid any all other medications.  I was having reactions to everything I took.

I saw an endocrinologist at John Hopkins that wanted me to start estrogen/progesterone as I had a rare case of menopause where my body had no detectable estrogen.  He mentioned that I would have to adjust the benzodiazepine down, but could not tell me how much.  I inquired with my primary doctor and functional doctor and no one knew.   That set off an alarm for me.  I opted out of taking anything until I came off the benzodiazepine.  I believe this saved me a lot of unnecessary suffering.

My best advice would definitely be to hold.  Hold until you feel completely stable…it may be a while.

My heart goes out to you.  It [...] such a nightmare trying to navigate these drugs on your own and it’s disturbing how they  impact everyone so differently.

Best of luck..

Thank you for your thoughtful reply! I don’t find I [...] many responses on here. I don’t know if it’s just due to the severity of my situation.

I think I’ve just really pissed off my CNS. Today I have nerve pain all over my face after a night of severe akathisia, no sleep. It just doesn’t feel sustainable to live like this. I need to do something. The last tiny cut I did sent me to the moon so I can’t do that again.

I worry I’ve done too much “glutamate damage” to my brain my staying in this state for so long.

[[Buddie]]

I think your body needs time to adjust,  that can take some time when you are dealing with hormones.  Don't panic about about the increase in symptoms, I honestly believe this will pass.

I would suggest eating as healthy as possible, maybe juicing to be sure your body [...] getting the nutrients to balance hormones out naturally.  I watched a UTUBE video a woman made after tapering off a benzodiazepine, she said in the video she made the  mistake of going on progesterone after the taper, she had the same response you are having. 

I found out I have Hashimoto's disease (thyroid).  I have realized that absolutely everything I ingest has an impact.  I am very mindful and stay away from caffeine, alcohol and all other stimulants.  I am not willing to take any chances at this point (I am eight months post taper).

With all the symptoms you describe below it sounds like you may be having a thyroid issue.  Please be sure to have your B12 checked, mine was dangerously low when I began having nerve pain, no sleep etc.  Just a thought.

With all that said, I think you are going to be [...].  Just give things some time to settle down.

[[Buddie]]

Through a simple but catastrophic mistake this thread and the Menstrual Support Group were merged and all of the subject titles were changed to The Long Hold Support Group making it impossible to disentangle them.  However, its still possible to search by member name to find relevant posts.