Kristin’s mom- very concerned

[[Bo...]]

My daughter Kristin is violently sick. She didn’t jump over weekend having reached .010mg bc she thought too high still given, then went to .008mg to see how she could do for last 2 nights. She took unisom spec 3mg last few nights after being in ER last Thursday bc she’s exhausted and jolts keep her up all night. She’s battled a very hard long taper snd 0-2hrs sleep was common and extreme nausea but she could always still get food in her.

She felt terrible all last night and then took unisom around 1am. Didn’t sleep, by 3am she was shaking, crying and terrible rocking. Got her curled up and she fell asleep only to wake up a bit later violently dry heaving where she was choking and hard to breathe. Now has diarrhea-  again something she’s had on and off thru her taper that she dealt with. My thought is it’s something she ate, although she eats the same thing every day- or the unisom? I can’t seem to think it’s the cut to .008mg.

 I am very concerned. She is down to 102lbs and her electrolytes have been up and down last few weeks- in ER to get fluids.

Really need some thoughts on this situation. We hear people struggle in acute but this seems very extreme after a long, slow taper. I don’t know how it is sustainable to be so sick at her weight and the stress of the violent shaking and dry heaving for so long on her body.

I appreciate any feedback because I again am very concerned how severe this has gotten.

[[mi...]]

I don’t have any answers but I am so so sorry she is going through this. She has been so good to me on here! Please tell her I’m thinking about her.

[[Li...]]

I’m so sorry your daughter is suffering.  If I’m remembering correctly, she made a series of rather large reductions in dose (e.g. 20%, 25%, 33%) around the same time she began to experience issues.  I wonder if those might have been a tipping point for her?

It’s also possible she’s reacting to something in the Unisom.  What specific Unisom product has she been taking for the last few nights?  Might she be having an issue with one or more of the ingredients in it? 

Which Unisom Product Is Right for You & When
https://www.unisom.com/en-us/sleep-hub/staying-asleep/which-unisom-product-is-right-for-you-and-when

 

[[Bo...]]

Thank you. She has taken Unisom a handful of times before but now at a loss.

At these low doses and how slow her taper has been, she took 15 months to come down from .162mg to this point- the reductions made could cause this severe destabilizing? She was walking decently, eating well, running errands with me, sleeping much better up until mid July.
She did notice her bottle of compound liquid starting end of June was a completely different consistency, chalky white and then the recent bottle shipped Thursday was the same as it’s always been, clear, the last year. Pharmacist said nothing changed.

What are options to consider given what others have done at this kind of severe point? She doesn’t want to go back up because don’t know how bad that will make things and then she is at a higher dose, hold here I guess we will try? 

Is it common to get this severe in acute?
We worry how dropping completely off will now be since she has told us and we have read how hard that can be. She has worked so hard at this and mentally not sure how to proceed to be successful.

[[An...]]

I don't have too much to offer, but have been corresponding with Kristin a bit during the past 6 months. Many of our symptoms are strikingly similar. 

I tried unisom for sleep one time and was up all night shaking and dealing with severe thirst. It was awful. 

Just want to share this because she and I seem to have had very similar symptoms and reactions during this. 

Please tell Kristin I'm praying right now for her relief.

[[Li...]]

Thank you for sharing your experience with Unisom @[An...] This is very helpful.  Do you recall what specific product you used?  

Mom of @[Bo...] …

 

Although your daughter may have tolerated whatever Unisom product she is using in the past, it’s possible one or more of the ingredients in the product may be causing issues now given her current state.

I can’t recall whether your daughter made the large reductions before or after she received the batch of liquid that looked different from previous batches (I hope the pharmacist offered to make another batch after he was informed of the issue).  I do recall the reduction series began with a 20% reduction in dose from 0.05mg to 0.04mg, then increased to a 25% reduction from 0.04mg to 0.03mg followed by a 33% reduction from 0.03mg to 0.02mg. Those are large reductions of a very potent benzodiazepine.  So, yes it’s possible (perhaps even likely) they were a contributing factor to your daughter’s status change from relatively ok to not-at-all ok. 

I came up with the same list of options to consider as you: updose, hold, or taper off.   I hope other members will suggest other options and/or help identify the pros/cons of any options suggested.

 

 

[[An...]]

Libertas, I don't remember which unisom it was. It was awhile ago. But, the reaction was extreme. I've had the same reaction to claritin which I took before benzos with no problem. 

I really think our cns is so sensitive from the injury that these previously well tolerated substances cause us  problems at the moment.

I really don't want to give advice, but just to share another experience that might be similar: I just did a .003 mg reduction of my clonazepam dose, and I felt it quite a bit. I am much higher up in my dose than Kristin, but still felt the reduction as my cns is destabilized. 

I'm wondering if holding right now for a bit might allow for some stabilization. I know that nobody knows the answer, but just thinking maybe not to do anything right now that may affect a very sensitive cns. Just thinking out loud here.

[[Bo...]]

Hi it’s me Kristin.

thanks y’all. Im terrified bc I didn’t heed the warning to slow down. I also didn’t take into account a brief CT 7 days on when dr changed me to sonata for 2 days and then back to K. Was on ambien for 2 months tapered for month 6 months into my ordeal so on K and ambien at the same time.

need some guideline for kindled people. thank uiu. 

[[mi...]]

@[Bo...] So good to hear from you Kristin. I’ve been thinking about you a lot lately. I even give my wife updates about you, for some reason, she even asks how you’re doing from time to time. I think we just connected when we first chatted. I’m pulling for you!

[[An...]]

Bumping up for more views.

 

[[Bo...]]

Just home from ER, had a paradoxical seizure or something form using about an 1/8 of a pill of .1mg clonidine for extreme akathisia. Ambulance came out, it was my eyes couldn’t blink, mouth open and I couldn’t talk or look at anyone and heart was way high BP super high. 

i feel so hopeless about having something that can help thru the hell. I was doing so decent and was so hopeful for the last part of my taper given things had improved.

Prayers for all of us. 

[[ia...]]

1 hour ago, [[B...] said:

Just home from ER, had a paradoxical seizure or something form using about an 1/8 of a pill of .1mg clonidine for extreme akathisia. Ambulance came out, it was my eyes couldn’t blink, mouth open and I couldn’t talk or look at anyone and heart was way high BP super high. 

i feel so hopeless about having something that can help thru the hell. I was doing so decent and was so hopeful for the last part of my taper given things had improved.

Prayers for all of us. 

Kristin... I'm so sorry for what you're going through. We are praying for you... How is the shaking, dry heaving etc that your mom shared a few hours ago? Were you able to get fluids at the ER? Here to support you - and praying for your stabilization.

[[An...]]

Kristin, I'm praying so hard for your relief. It sounds like your cns is super sensitive to even the smallest bit of substance. I don't understand why, but some of us experience this so severely. Have talked with others who have had this very badly. You have made it down so far. Praying this acute phase lets up.🙏

[[Fa...]]

9 hours ago, [[B...] said:

Just home from ER, had a paradoxical seizure or something form using about an 1/8 of a pill of .1mg clonidine for extreme akathisia. Ambulance came out, it was my eyes couldn’t blink, mouth open and I couldn’t talk or look at anyone and heart was way high BP super high. 

i feel so hopeless about having something that can help thru the hell. I was doing so decent and was so hopeful for the last part of my taper given things had improved.

Prayers for all of us. 

I’m praying for you, Kristin.  I am so sorry to hear of this turn.  We are all here for you…🙏

[[ji...]]

Yes, praying for you Kristin, that God would heal you and give you peace, hope, and patience.

One day at at time...

 

[Guest [...]]

 

I’m so sorry you’ve been hit so violently, Kristin

Just by going through this thread, two things stand out… 

‘I think Libertas is right about the toll your climbing percentage took on you between 0.05 to 0.01

In addition to this, the more destabilised you became through those reductions, the more likely it was that you would start reacting to any other medications or supplements, and possibly foods, even though you may have previously tolerated them. But, the reason you previously tolerated them was because your system hadn’t yet become destabilised. Once your system destabilised, it become very reactive to those things you once tolerated. 

I guess what I’m trying to get across here… is that it appears to be a combination of increasing reduction percentage, which led to destabilisation, which then led to your body’s rejection of other medications/supplements. 

As difficult as I know it must be, I would probably do my best to avoid falling into the trap of reaching out for anything you think may help alleviate your symptoms right now, as it may potentially add fuel to the fire and cause another reaction. 

I just wish there were something more we could do to ease your suffering right now, Kristen. 

Sending love and healing 

WS

[[So...]]

I am praying for you & your daughter 🙏 her & I have a lot of similar symptoms it seems.

 

If there is one thing I have learned from my two withdrawals & one failed reinstatement it is that SOMETIMES once you have become destabilized nothing will really fix it except time.  So she may be healing from an injury she got earlier in her taper rather than the current dose reductions/being in acute.  If that is the case, going back up may or may not help, it is just a tough call, but either way the CNS needs time to heal from the injury. One thing I can say with certainty is that she will get better so just tell her to hang on tight & be there for her bcuz this is an ungodly painful experience.  Thank you for believing & helping her ❤️