Jump to content
Announcement: It is with regret... ×

Increasing dose after fast taper, not stabelising anymore


[Mi...]

Recommended Posts

She is a very young md. But she told me that for benzos they young md's are much better informed than the older generation. She admited having no experience with K, and prefered diazepam but i'm sure we can work something out.

 

I also live in one of the best health care countrys in the world

.i checked prices for a consult in that detox place and it was less than 2$  :o  i guess its the total opposite of detox centres in the states that i read in some of the blogs here.

 

Im not going anywhere jelly. You know where to find me if you need a talk. I'm sure we,'ll stabelise both eventually.

 

 

Link to comment
Share on other sites

  • Replies 110
  • Created
  • Last Reply

Top Posters In This Topic

  • [Mi...]

    60

  • [je...]

    32

  • [Du...]

    6

  • [Pa...]

    3

This is great news!!

 

I am returning to some sort of baseline today. I can feel it :thumbsup:

 

I am going to start a thread on rapid w/d as I continue forward for those to see my pace and hear how I’m doing.

 

Glad you have a doc on your side, that is a key piece to this jumbled mess of a puzzle. Good job

Link to comment
Share on other sites

This is great news!!

 

I am returning to some sort of baseline today. I can feel it :thumbsup:

 

I am going to start a thread on rapid w/d as I continue forward for those to see my pace and hear how I’m doing.

 

Glad you have a doc on your side, that is a key piece to this jumbled mess of a puzzle. Good job

 

 

Amazing news Duke !  Must feel good !  Glad the rapid taper is working for you. You are under 0,5 and stable. Thats a big step closer. You got this !

Link to comment
Share on other sites

I hope you are feeling better!!! If I had it to do over again I think I would try and reinstate and start over and go really slowly!!! I’m in another phase of my life so I don’t have as much on my plate as you.  I take care of a 2 year old grandchild a few days a week and there have been a few times that I barely made it!!!!

You’re going to do this eventually.  I believe the Ashton manual says something like sometimes it takes a few tries but anyone can eventually come off. 

The human suffering these meds have caused still astonishes me… RAW HUMAN SUFFERING!!! I’m still trying to sort out what’s me and what is benzo induced.  Feel crazy!!

Wouldn’t wish this on anyone! 

Take care of yourself and family❤️

Link to comment
Share on other sites

Having a bad day.  Fatigue and sad for myself

 

Starting to feel lonely in bed. 14hours is horibly long when you just lay dow. It took me years to accept chronic lyme and that my life will never be what i wanted for that 1 life we have.  Now i somehow have to accept this too.

 

I'm very bad at doing nothing, but thats all i can do from lack of energy now. The reality that stabilisation might take a month more of this is finally kicking in. One month !!

And still there is no certainty i'll ever get fully stable, maybe just less worse. Yesterday i was reliefed, today im thinking how tf am i going to do this without a mental breakdown.

 

Need to do some changes. Can't spend all day in my room, ill loose it for sure. I mist find a way to be able to live with the energy and noise of my son. Maybe earplugs? Got to find something !

 

 

Link to comment
Share on other sites

:thumbsup:

 

To help myself i'm trying different things to strengthen my mind.

 

- everyday i must do 1 thing positive.  On a bad day, this can just be to cut my nails, take a bath, shave. Basic things and taking care of myself.  On a good day this can be be fixing a leak, call for an apointment, do payments.  Doesnt matter what, and just 1 thing !

 

- my wife sleeps louder than a boeing 477 so i sleep with earplugs. Today i used them all day and it dampens the noise enough so i can spend my day outside of my room and my kid his nonstop talking/singing/screaming.  Helps ALOT with solitude in my bed. I need to keep my world big , not smaller

 

- i read stupid motivational quotes. Anything better than watching youtube videos of people with protracted wd who never get better.

 

 

Its weird. I feel a bit bipolar. On a good day i can be so positive, proactive, strong and on a bad day i'm just a total selfdestructive mess.

 

 

Now my friends.... i have no idea what to do. Should i tell them whats happening, knowing they will never understand,  just reasurring them?, say nothing?

 

I know from my lyme experience, they feel terrible first months, than they stary to think you are exagerating/finding excuses, and after 10y they just dont want to hear about it.

I guess its the same with an invisible illness like benzo adiction.  How do you handle friends/family.

Link to comment
Share on other sites

Good for you for keeping busy, I feel this is what helped me the most when I was recovering, I couldn't sit still or sleep so I put it to good use.  You're right about your world, don't let it shrink to the point where you no longer recognize it.  We lose our sense of self through this process which affects our relationships so keeping your life as normal as possible will help you through this.

 

I'm glad you found earplugs helpful, this is the kind of out of the box thinking that will help you get through this!  :thumbsup:

Link to comment
Share on other sites

Pam.... Cold turkey 6 to 10mg K and you survived?!

I just read your story. Don't know what to say. I can't even imagine the horror you went trough. Thats enough suffering to get ptsd just there. Its inhuman.

You must be the strongest person i met.

I think i'll remember your story for a long time.

Best part, you healed !

 

 

 

 

Link to comment
Share on other sites

Update :

 

10days back on 1mg K.

- panic atacks : gone after 4days

- anxiety : gone after 10days

- sound sensitivity: its better. I still use my earplugs when needed but its improving. Id say 50% better

- crushing fatigue : still strugling. Id say its 20% better , but my problem is every day im sleeping more and more.

I went from 6hours to sleeping 12hours. I still wake up many times, 1am, 4am, 7am, etc.  The question im having is , did my body already adjust when going down to 0,2mg and is 1mg to much?  I need to check some stuff for my lyme (cant taper if there is a chance for a relapse the coming months.

 

One part wants to try 0,8mg and see if i can feel less sedated and sleep less so i can begin to work again next month. But im also afraid going up and then down again would mess me up even more. Plan was to stabelise whole summer...

 

Not sure what to do. Hope i can talk my md soon for advice.

Link to comment
Share on other sites

I see major improvement so that's good but the 12 hours of sleep is concerning especially if you're feeling too sedated.

 

I don't have experience with this but I've read members talk about how they felt when they made the transition to Valium and how it made them feel sedated.  After a time their body adjusted to it and they felt better after that.  I wonder if you might be in a similar situation, I wonder if your body will adjust to the 1mg?  Of course Klonopin and Valium are vastly different and my theory could be out in left field.  :-\

 

If you're nervous about going down to 0.8 maybe give this dose a little longer.  Hopefully others will stop by with some input. 

 

Oh and as for me being strong, that wasn't it, I didn't have a choice because I have addiction issues, I only had one chance to get away from the drug and I had to take it.  So very glad I did though.  :)

Link to comment
Share on other sites

I am so glad to hear you are improving and you sound so much better than that deep dark place you were in a few weeks ago! Clearly updosing was the right decision for you.

 

I just want to stop for a minute and really celebrate how far you have come!

 

With regard to the fatigue and sleep, unfortunately I'm not sure what advice to give you. I haven't experienced it, mine was the opposite and I can't remember reading anything similar. Keeping in mind that you're also dealing with lyme, my gut instinct would say to hold your current dose for a few days and give it some more time or speak to your doctor. I would hate to see you make a cut and then go back into the spiral you experienced before if you haven't been stable for a while. I can understand the fatigue and extended sleeping are frustrating but it's probably more tolerable than your previous symptoms. However, as we always say, you are the only one that really knows your body, and therefore you ultimately have to make these decisions.

 

I really hope there's some improvement on the sleeping when you update again!

Link to comment
Share on other sites

Thanks for the feedback and nice words !  :smitten:

 

Yes, valium is known to give issues with ME/cfs patient (often lyme). It increases there symptoms (not even talking about withdrawel). Didnt find info on K and lyme. I know almost all lymies take K if they take a benzo. Often they add a AD to deal with it as chronic lyme is tuff.

 

Also didnt find much info about fatigue and benzo.

Yes there is a part about muscle fatigue from twitching etc but thats not my case. It feels like cfs at its worst. I went to a shop yesterday for 1 hour and i feel its gonna take me several days to recover.

 

Guess the cfs and benzo must work on the same part of the brain and one triggered the other.

 

As all the rest is better, and only this is getting worse i agree its possible not benzo and i better stay at the dose i am. Still got a month, hope it improves.

 

I got a feeling this lyme is really gonna make things alot harder. My lyme md is away, but i managed to convince the lab to do some Urgent testing. If those are bad, i might need to do a lyme treatment first or maybe taper together if thats even possible. I cant test fatigue, just inflamation etc, but il will give me a rough idea : did the benzo c/t trigger a lyme relapse or are my values stable and is this just fatigue from the hell i went trough. Im SO glad they let me test this myself. That info is priceless and i need it mentally to know where i am at.

 

 

Yes, im in a better space.  Im mentally myself again wich is a big step, but functionality is still my nr1 priority and im not there yet. And i'll probably will have to find this out myself, as lyme is like benzo's its hard to find a good md, and finding one who has experience with both dont exist.  So this will be trial and error, and that scares me.

 

Not knowing, will i be functional by the end of the month?

I try not to think about it, but its hard if everyone around you depends on it. And my  cfs being at its worst worries me alot !

Im strugling to just trust time to solve everything. But there is no chronic fatigue pill. Ill eather heal or ill be f#$$ at the end of this month and its hard to not let that get to you.

 

 

End of rant .

 

 

Link to comment
Share on other sites

Holding on.

 

Decided to go on vacation (if i physicaly can get there,) to my parents for my wife and son to go to the beach and have fun.

 

Still feel completely KO after 3 weeks now on 1mg.

0% improvement in 3 weeks. Sleep 12 hours, eat, go back to bed till 8pm, have dinner and a cigar, go  back to sleep.

 

 

Ordered several tests.

* Regular blood  was ok. Nothing that  ould ecplain it

* covid test today, get.results tomorrow,

* doing special lyme tests tomorow. (Inflamation, imune activity, etc) wont get results before end of the month.

 

 

I know my doc said, give it a month or 2. But its been a month almost, and my gut feeling says  , something is wrong.

 

The doc from the rehab called. Sadly i got red flags all over.

Typical: 1mg K is nothing, thats easy, do you want AD  , AP, etc while i told her is wasnt depressed or anxious anymore, fast taper... didnt know if K was short or long working,...ill give her a second chance, but seems like the typical rehab mentality. She couldnt answer many of my questions  except the being ko was not a typical reinstatement symptom and i shouldnt have symptoms after 3 weeks updosing.

She said my case was to complex to know if the fatigue is from to much K, vaccin or lyme.

 

 

 

I still think my K dose is to high. I feel sedated/more than fatigued, but its very hard to tell the difference between tired, exhausted, sedated, bad sleep, etc.

In the morning when i wake up, it feels like waking up post op. Or you are totally waisted from tequilla.. You wake up, but you fall back half asleep 5seconds later, several times. You hear everything, your mind us awake, but you cant keep your eyes open , you just want to sleep more. I need a good 2 hours before i actually can keep my eyes open long enough to wake up, and i feel ko rest of the day, at night its often better. I get headache for an hour (hangover type) and than the dizzyness and sedation is 70% better. (weird!).  Shitty part is, i cant just say, hey , lets try 0,8mg K for a day and see if i feel better. That would take 2 months tapering safe (5%/14d) + a week waiting because of the long halflife

 

If its lyme, the tests will take up some weeks and i see the md in september only. So i cant wait for her opinion...

 

I need to do something now. I need to be functional by august. So....  here i am. 1 month left. No improvement after 3 weeks. I have thought of doing both. Very low dose of lyme treatment and going to 0,9mg and hold and see if sedation improves. But doing both , i wont know wich one it was...

 

0,9mg Its a 10% cut at higher K dose where i reinstated 3cweeks ago, wich is high, but acceptable? . Not ideal, might have withdrawel for a week, but im at my parents in safe place, lots of suport and not working or i might feel less sedated and no withdrawel?  So thats an option. 

 

Is there ANY way to test in blood or any test if my K dose is too high and  sedating me too much?.

 

Its the only medication im taking, and lyme relapses usually isnt that fast, even though the vaccin could have triggered a imune reaction. Its just so hard to know what is the root cause  and no md or person can tell me for sure. I was hoping to get some improvement, but 3 weeks, 0 improvement, means i have to make a educated choise now, or ill be the same by august.

 

 

 

 

Link to comment
Share on other sites

Did some research.

 

OVERDOSAGE Symptoms Overdosage of benzodiazepines is usually manifested by degrees of central nervous system depression ranging from drowsiness to coma.  In mild cases, symptoms include drowsiness, mental confusion and lethargy. 

 

Another thing i checked was plasma levels or half life. Sadly one medpub was not free, but eventhough the halflife fir K varies from 19 to 60hours , i did find out , that the big difference is true for neonates , but it is pritty stable for adults.

 

Neonates:  elimination half-life (41.9 ± 29.8 hours)

Adults:  The mean elimination half-life is 39.0 ± 8.3 hours for one 2mg oral. Crevoisier , 2003

Adults = elimination half life after 3x 0,5mg / day, daily dose for 15 days, acording to Greenblatt, 2005 is  39,6 +- 2,5h

 

Now IF what i'm feeling is a mild overdose, what would my regular stable dose be?

 

If 1.0mg is 100% at 0 hours after intake.

If halftime is 50% or 0,5mg after 40hours of intake.

I feel better about 20 hours after intake, that means my plasma levels of K after 20hours are =  1mg - (( 20/40) * 0,5mg) = 0,75mg K.

 

So 0,75mg K  might be my highest stable dosage iF i am experiencing mild  drug overdose from reinstating.  :crazy:

 

The 100 dollar question. If someone is in mild overdose do you still need to taper down to stable dose or not...

 

Gonna call my md tomorrow after the covid results and ask her about my idea.

Link to comment
Share on other sites

Hi Miya

 

Thanks for the update. Have you had a setback? You say 3 weeks after reinstating there's 0% improvement. A week ago you gave an update of several things that have majorly improved - are you now back to square one?

 

I'm sorry you're still struggling with severe fatigue. It's good that you're researching these and taking control of the situation. I wish I could be of more help, but your situation is so complex with so many variables at play that I'm just not familiar with. And I do not want to take a gamble by guessing because it would not even be an educated guess.

 

If you decide to reduce, I do think though it would be better to taper down to your desired dose rather than making a big cut. 

 

I am glad though that you're out of the acute phase, even though you're not exactly where you want to be yet.

Link to comment
Share on other sites

0% improvement on the fatigue.

 

The rest is gone :-)  except maybe some soundsensetivity and brainfog, but maybe its a result from the fatigue (or the lyme, they have the same symptoms) .

 

Yes the acute is behind  ,  20h a day in bed is just not ok yet.

 

Im taking 0,9mg K sinds today, pbb do 2 weeks or 10days, see if i see improvement (by then the lyme test will be in i hope) and than another cut to 0,8mg if lyme is not the reason.

 

Yes, my case is very complex, to add to it. I take disulfiram to treat borreliosis, and it interacts with K. It increases its potency. No idea how much.

 

Just because its so complex, no one can advice me, and im left to decide by myself. Makes it extra scary. First thing first, test everything i can  to rule out other things.  If all is good, it must be k and im just a stoner 20h/day.

 

 

Link to comment
Share on other sites

Thanks for clarifying. I was really worried you might have had a setback and my interpretation that you're out of acute was wrong.

 

I do understand that severe fatigue making you non functional is debilitating  and distressing. This really sucks.

 

I keep holding onto the hope that you have had such solid improvement in some areas and surely the fatigue has to let go as well. Maybe your notion on reducing K is worth pursuing.

 

I would also suggest you ask on the tapering boards. There are quite a few people who are very knowledgeable about half lives, serum levels and the metabolism of clonazepam. You can just copy and paste some of the info here and collate it into a new thread over there.

Link to comment
Share on other sites

A conundrum indeed.. -brings back some memories.. :(

 

Just from the last of this thread, If I may..

 

Im weighing up the importance of ones gut feeling as to sedation/fatigue being excess medication, and my, and countless others experiences of this happening following significant change, be it a CT, reinstate, a cross over, introduction and/or cessation of other meds, or anything similar.. I wouldnt like to guess (either)..

 

One thought I did have is if it would be viable to use your past experience of any more direct (acute like) symptoms as a gauge if you decide to reduce a “chunk” in your exploration for an answer..?

-Sorry, pretty simplistic I know, and its not advice to cut, but if your doing so anyways, these more volatile and direct reduction related symptoms are something I often used to help work out where the hell I was at on which med..

 

For a point of reference if reading my sig, there have been two occasions where my fatigue started to break.. After about 7 years of general discontinuation, the first was at the end of my (slow) valium taper and before the disastrous sudden opiate cross over.. The second, now 10 years in, was a slower improvement, say over the last 12 months of my very slow tapering of my final med, but with a more notable increase of “vitality”, rather suddenly about a month ago.. -Very much fwiw..

 

I have, over the years been extra sedated directly due to medications, for quite a chunk of time actually (400+ mg oxy will do that, as will a “naive” dose of 25mg valium, or a few thousand mg Gabapentin), and I have to say I find it hard to see a difference between medication damage, discontinuation effects, and excessive dose..

-Which to me, highlights the value of ones own “gut feeling” on the whole situation...

 

Again if I may, and I wont be telling you anything you dont know, but I feel your pressure to a timeframe, obviously for a very valid reason, may be a problem thats going to need much consideration, and perhaps more, -support..

I cant really speak to your situation and choices from

Link to comment
Share on other sites

Thanks for helping thinking.

 

Sometimes doing nothing and heal is the best option

Sometimes doing nothing and the tide will drown you.

A very thin line, with huge outcome differences.

 

It all depends on cause of the fatigue.and atm we dont even know the origin. So before i do anything (except the small taper)

 

Thinking like a scientist :

Write down every single posibility,  think what can i test objectively ?! , and  have a gameplan ready for each possible outcome to not loose time when the results come in, and folow your instinct if no md can advice me further.

 

Then there is the gut feeling... mild overdose. Taper to 0,9 from 1,0 is nothing drastic. Eventually that would happen anyway, its like a free test to see how my body reacts.

 

Atm these are the possible reasons.

 

- Covid : pcr test came back negative -> do nothing  :thumbsup:

- lyme relapse: tested today (result in a month) -> start treatment asap in case. I ordered the meds, got my plan, im all set. -> Waiting results.  8)

Hormonol : tested cortisol, etc today (result in a week) -> ask md  :angel:

AZ Vaccin : 28% of lyme patients have symptoms left after a month of that specific vaccin.  -> do nothing, heal  :thumbsup:

Reactivation of old virusses : tested CMV ,  EBV (results in a week) -> ask md  :angel:

K : do a single 10% taper check to 0,9mg. If fatigue/sedation impoves = mild overdose. Contine 10%/14D taper to 0,75 and hold there . If i get new withdrawel symptoms and no improvement on fatigue ON 0,9mg its probably not OD, but still withdrawel from the rapid taper. --> Do nothing, heal .  :thumbsup:

 

I think i have every option covered.

So glad i managed to do all those different tests,in different labs in 3 days, asking favors everywhere  : ::)  im exhausted ,!!

but now i can go on holiday, empty my head, and just rest for 2 more weeks, hoping i will be wiser by then.

 

 

 

 

 

Link to comment
Share on other sites

Cantfly:

I dont have much experiencing tapering down.

I felt nothing from 1mg to 0,4mg , and from there on i went straight in acute withdrawel.

 

Do i understand correctly that a 1 time chunk, could give a better idea, compared to a 2 week taper?

 

Ps beside the sedation, i also am very dizzy when i stand up  and im still not hungry/diarea. No idea if this info helps to give answers.

 

 

Link to comment
Share on other sites

Cantfly:

I dont have much experiencing tapering down.

I felt nothing from 1mg to 0,4mg , and from there on i went straight in acute withdrawel.

 

Do i understand correctly that a 1 time chunk, could give a better idea, compared to a 2 week taper?

 

Ps beside the sedation, i also am very dizzy when i stand up  and im still not hungry/diarea. No idea if this info helps to give answers.

Sorry, my fone gremlins stole the last of my message.. -I was just saying our situations differ there, but plenty here can offer good support in that area from experience.. (Juggling work and tapering)

 

Then something like dont give up, hang on to hope, and keep up your good job of working through your personal tapering parameters..

 

**

To your question, its probably splitting hairs at a 2wk taper, but the point is to highlight symptom change with the least change, so yes, for that point, a smaller but quicker cut might do the trick..

Again, my past history was probs an advantage for me, a 25-33% fluctuation on several meds was nothing new to me.. -Though I wouldnt suggest that much for you in this instance.. Not to be prescriptive, but I was more guessing at something like 10% (ish)..

 

As to your “PS.” -For ME they would fall under “deeper WD symptoms” but perhaps not as deep as “damage”..  Though Dizzy and not hungry could go either way and be excessive meds, but diarrhoea more likely WD (imo).. -Though I would like others to chime in on that, I cant do diarrhoea if my life depended on it.. (OIBS-upper (opiate damage))..

 

Pls remember, I just picked up on one little aspect of your situation, this is far from “wholistic” or big picture thinking.. I suspect you will manage that to best advantage on your own with the processes you outline above.. -or, the learning and understanding is in the journey.. (Shortcuts from prescriptive advice can bite in the final stages..)

 

:)

Link to comment
Share on other sites


×
×
  • Create New...