I am getting worse each day

[[va...]]

Hi Jen. I'm so glad you have DD and Cantfly here who are giving you such great advice. You'll soon be off and I think Cantfly is right that it doesn't seem like it should get much worse as you've been in acute wd for so long now. I agree about the propranolol, it did help me a bit last summer. Hydroxizine I took tons too. It's an antihistamine. In summer I was so terrified it did nothing, but looking back, maybe I would've been even worse without it. Cant is right in that a hold would take ages to work, I can tell this first hand. You'll soon be off, you'll continue healing, you'll get well, and then you'll encourage me through my taper, if I can ever resume my taper that is. I hope you can get two or three hours sleep tonight Jen. But I'll pray you get seven. Thinking of you every day. Love, Janice.

[[be...]]

I also admire you, Jen. But you have to remember that when you hit a very low dose, the % cut automatically becomes higher. Your last cut is 100%. Good luck. I personally think you’re over worrying and I also think Ajusta is right.

[[ch...]]

Do you mean about if I am not stable then I have to go through it?

 

Not sure as Adjusta made two posts

 

I do know it has to go somehow but how I will survive I don't know , or if I will ever mend, I have to hold onto the fact that people do though and perhaps what I feel is acute already,

 

Jen

[[de...]]

We don't know that Jen is in Acute.  I've experienced all of the symptoms Jen describes, taper and post taper.  I've never labelled it Acute.  Maybe it was, idk.  Think we bandy the word Acute around a bit too liberally. And I do know the suffering.

 

I'm pretty sure you'll continue your taper 'til you get to 'fumes' Jen.  Feels safer.  Rightly, we construct our own taper.  But if it were me I'd stop now. 

 

Can't help but think about being trapped longer than necessary in painstakingly slow tail end tolerance.  Excruciating.  Wring my hands.  I could be wrong, and don't know that tail end tolerance exists, but intuitively it seems it could.

 

Not much longer to go whichever approach you adopt Jen.  Free then  to work on real recovery.  A new beginning.  Even at our age. 

 

For your eyes, I would daub with simple hot water and seasalt.  Wash away the tears. 

 

Dee

 

 

 

 

[[ch...]]

Thank you Dee.

 

I need the courage to just stop, I know this and I think it adds to my misery. Oh to have a day with reduced symptoms, or  just a day that is free of all the fear and adrenalin,  Just something to say I can heal , I think I have tapered way too  long, and in the end I have still suffered. 

 

You are right though, whatever I do now the end is close.

 

I am just hoping I am granted a little sleep tonight, and of if my ears would be quiet. I keep hoping that at some point I will see a tiny chink of light,

 

If someone were to ask what I wanted for Christmas it would be some peace and calm,  I lived in this fear state for almost 2 years now and so much of it has been tapering from just 4mgsV for a 3-4month use,

 

I am hoping that if effort equals a good result that I will heal , but it's not feeling that way at the moment,  ,

 

I am glad to read that you are at last seeing  some light after 9 months,  That's gives hope,

 

Jen

[[be...]]

Do you mean about if I am not stable then I have to go through it?

 

Not sure as Adjusta made two posts

 

I do know it has to go somehow but how I will survive I don't know , or if I will ever mend, I have to hold onto the fact that people do though and perhaps what I feel is acute already,

 

Jen

 

Since you’re on such a small dose, I don’t think it’s a stretch to say you’ve hit acute by now. Just from the tons of posts I have read.

[[ch...]]

If I have hit acute then at least I know this is it, . I don't think I could deal with worse, 

 

Just I am worried that the antibiotics have brought me to a bad place, as two of them are gaba antagonists and can cause setbacks, 

 

I cannot understand why I am so bad otherwise, I don't feel any healing at all . But if this is acute then at least what I am going through is part of healing,

 

 

I have no idea really, feels far more like a CT since the third antibiotic,  but it might just be the extremely low dose,

 

Thank you for caring

 

Jen

[[Aj...]]

If antibiotic is antagonist then it will have acted as if you lowered dose.

 

If agonist it will have done similarly to raising dose.

 

I’m so sensitive to all meds that either of these would cause havoc.

 

Do you feel any change in symptoms at all good or bad when you dose now?

 

When was your last cut? How much have you cut in last 2-3 months because in my experience that is how long it takes for changes in levels to really effect brain.

 

I am sorry Chinchuck but you probably are going to just get through acute. I think for those of us that are not stable tapering  that is just what we have to go through. It might be that it eon’t Be any worse than it already is.

 

 

[[ch...]]

If antibiotic is antagonist then it will have acted as if you lowered dose.

 

If agonist it will have done similarly to raising dose.

 

I’m so sensitive to all meds that either of these would cause havoc.

 

Do you feel any change in symptoms at all good or bad when you dose now?

 

When was your last cut? How much have you cut in last 2-3 months because in my experience that is how long it takes for changes in levels to really effect brain.

 

I am sorry Chinchuck but you probably are going to just get through acute. I think for those of us that are not stable tapering  that is just what we have to go through. It might be that it eon’t Be any worse than it already is.

 

 

 

I do feel a change about half an hour after my minute dose but I don't know if it's real or psychological, 

 

I have cut 0.5 mgs approx. in the last 2 months  Adjusta, 

 

 

[[Ca...]]

Its good to see you can still post..!! I think this is the time Distraction is key.. What are your distraction tools..??

For me it was easy, I was/am very lucky that I can watch just about anything on tv/internet.. Yay and thanks 123movies... But I understand that might not work with your particular SX, many find it hard to find stuff that isnt triggering, or have problems with the screen or sound..

Sorry if this has been covered, -but a few off the top of my head.. The games threads here (though I thought I saw you there recently..??), knitting, bead threading, drawing/painting, reading..

Im no expert, but I think a brain to hand connection helps... Just not smoking or “picking”... I have picked myself raw in the past due to the phantom skin irritations, and it took a trick or two to fix...

Im sure you can get more ideas if you ask, -if needed...

The next is Acceptance, but it takes time and practice so I wont bombard you with that now...

After that, it starts to get into the Proactive stage...

Then Healed..!!

 

Just beware the Comparison stage or trap...  Mainly because our minds will jump to the worst when we really dont know...

 

You have fought a good fight, and you can take that to the bank, as they say...

Well done..!!

 

 

[[Aj...]]

If antibiotic is antagonist then it will have acted as if you lowered dose.

 

If agonist it will have done similarly to raising dose.

 

I’m so sensitive to all meds that either of these would cause havoc.

 

Do you feel any change in symptoms at all good or bad when you dose now?

 

When was your last cut? How much have you cut in last 2-3 months because in my experience that is how long it takes for changes in levels to really effect brain.

 

I am sorry Chinchuck but you probably are going to just get through acute. I think for those of us that are not stable tapering  that is just what we have to go through. It might be that it eon’t Be any worse than it already is.

 

 

 

I do feel a change about half an hour after my minute dose but I don't know if it's real or psychological, 

 

I have cut 0.5 mgs approx. in the last 2 months  Adjusta,

 

If you still feel dose then I think you may need to carry on slowly. I don’t think it is psychological. I know in first taper before knew all this shit was amazed could still feel tiny dose.

 

You have cut quite a bit in two months but O think you were not ok on the diazepam were you so it is difficult. I am in that position on Clonazepam and diazepam now after 20 years of being fine on it.

 

Did you add your dose back in yesterday?

[[ch...]]

Yes I did add it back last night and took it with the evening dose,

 

I have tried not to take the daytime dose again today and will take it tonight, as I really want my body to not rely on something in the day. where at night I do not feel a need, If I can accept that then I break the psychological dependence if that is what it is, and if it isn't I still get the dose, 

I know it's so low now it really should not have an effect but maybe it is and percentage wise the cut is very large,

I don't that I can do anything other than continue to drop down, and then see what happens .

 

Today will be .06mgs. I really do wish this extreme adrenalin feeling would ease, It's panic gone mad and never goes till evening and then not always,  I get so frightened what will happen , I don't want to go back on the drug ,and how can I?  It didn't help me, not for long anyway 

 

I fear as many others probably do that it's other things causing this or it would be easier, 

 

I worry about AD's tried, and in the distant past,  I worry about drinking wine in the past, I worry it's a genetic thing and I wont heal at all, and nowhere to turn now ,

 

I have to convince this brain of mine that I will heal  . It will recover but not when on valium,  I hope I am not too old as I have a lot of living I want to do

 

Jen

[[ch...]]

Its good to see you can still post..!! I think this is the time Distraction is key.. What are your distraction tools..??

For me it was easy, I was/am very lucky that I can watch just about anything on tv/internet.. Yay and thanks 123movies... But I understand that might not work with your particular SX, many find it hard to find stuff that isnt triggering, or have problems with the screen or sound..

Sorry if this has been covered, -but a few off the top of my head.. The games threads here (though I thought I saw you there recently..??), knitting, bead threading, drawing/painting, reading..

Im no expert, but I think a brain to hand connection helps... Just not smoking or “picking”... I have picked myself raw in the past due to the phantom skin irritations, and it took a trick or two to fix...

Im sure you can get more ideas if you ask, -if needed...

The next is Acceptance, but it takes time and practice so I wont bombard you with that now...

After that, it starts to get into the Proactive stage...

Then Healed..!!

 

Just beware the Comparison stage or trap...  Mainly because our minds will jump to the worst when we really dont know...

 

You have fought a good fight, and you can take that to the bank, as they say...

Well done..!!

 

 

 

Thank you Cant, for your ever caring and thoughtful post,

 

You are such a kind person, and know my story well,

 

I don't know if I am doing the right thing tapering in this state but truly I see so little choice for me,

 

I have tapered for so long, except this last bit has been steady and consistent drop down

 

I fear I am going too fast now but so many say my dose is so low I should get off,

 

I dread I will go even worse as each day I feel as if I am ,

 

I truly am scared I know this, as the fear rises, either from the taper or from my own natural anxiety, or is it other things in the past, AD's or even the wine I used to drink some years back,

 

It all worries me, as I don't get a day without this inner fear state that is getting stronger,

 

I have taken a year to reduce 3mgs valium so not fast by anybody's standard, I just worry I wont be able to take even worse terror for weeks or months , the final jump should feel good but in truth I am terrified

 

 

 

[[Aj...]]

Have you spoken to Baylissa or Jenn Leigh?

[[de...]]

🍓 🍓 🍓

 

Jen will 'get' this. 

 

Dee

[[ch...]]

Have you spoken to Baylissa or Jenn Leigh?

 

 

I have spoken to Baylissa a little while ago

 

 

[[ch...]]

🍓 🍓 🍓

 

Jen will 'get' this. 

 

Dee

 

Thank you Dee 

[[Aj...]]

Have you spoken to Baylissa or Jenn Leigh?

 

 

I have spoken to Baylissa a little while ago

 

Did she tell you it is all WD and you will get better?

 

If so then trust her. She has seen thousands of ppl go through this.

 

Unfortunately she is unable to reassure me any longer and just says ‘You have your pre-existing conditions’ I.e ME/CFS, hypermobility Syndrome and spinal injury and surgery.

 

 

[[ch...]]

Have you spoken to Baylissa or Jenn Leigh?

 

 

I have spoken to Baylissa a little while ago

 

Did she tell you it is all WD and you will get better?

 

If so then trust her. She has seen thousands of ppl go through this.

 

Unfortunately she is unable to reassure me any longer and just says ‘You have your pre-existing conditions’ I.e ME/CFS, hypermobility Syndrome and spinal injury and surgery.

 

 

Yes she did say this. but of course this drug makes you doubt everything, . I too wonder is it my underlying anxiety or the AD's in the past ,or what, I torment myself over and over, especially as I did drink some years back , or could it be genetics?

 

The only way to know is to get free and let time do it's thing,  I guess, but just now the  terror and fear is so strong, and stopping seems even more terrifying,  but what else can I do?

 

 

Jen

 

I am so sorry you have such a lot to cope with.

[[va...]]

Jen, hundreds of us have drunk more than a reasonable drink here and there, and I see most of those people healing, so stop blaming yourself for what is withdrawal only, please. I'm so glad you talked to Baylissa.

[[ch...]]

Jen, hundreds of us have drunk more than a reasonable drink here and there, and I see most of those people healing, so stop blaming yourself for what is withdrawal only, please. I'm so glad you talked to Baylissa.

 

 

 

Thank you so much for trying to reassure me, I hope you are right,

 

 

Jen

[[Ca...]]

Jen, to counter what I said about holding a bit... If you feel like you need a break, then by all means...

 

I dont know how people can say very low dose has no effect, I think they get hung up on therapeutic or treating a condition “effect”...  Sub therapeutic, the body is transitioning onto it’s own neurochemistry, so to me, it stands to reason that there is indeed some effect, just not a “treating” effect...  Imo, this is one area that many of us deviate from the more general writings of Prof Ashton that she aims at the more average discontinuation..

Tbh, I think that for those of us that are particularly sensitive, its probably the most important time of ones tapering.. My earlier post kinda reflected that for very low dose tapering to be effective in this way, one really has to have been tapering inline with ones bodys ability to adjust in the finer details and the longer term, or there is a lot of catching up to do that may take quite some time...

 

But its also individual, and if one is, or has a history of “reacting” to these meds, then im not quite sure where that leaves us... -Gut feelings, and best guesses, I imagine... And as your aware, the psychological aspects are important too..

 

I think, were it me, I would try to cautiously use increasing symptoms as my guide...

-Not healing till one is off just doesnt wash with me... -at all.. The exception possibly being a reaction or an addiction type situation...

 

Sorry, its a personal choice, and how much the value for an individual, is, -well individual...

Sometimes I think the coin being flipped is the wisest of us all...

 

Either way, you have done a great job, and healing will happen with a gentle and wholistic push in the right direction, as and where possible... It IS happening, or you wouldnt have gotten to where you are now..!!

 

Strength to you...

 

***

Just my thoughts, and no offence to anyone, I cant remember what has been said earlier...  All opinions count, and context may vary..

 

[[ch...]]

Thank you Cant for you well thought out reasoning, and I am inclined to agree with all you say .

 

This last part, and in particular the last mg or so of this drug seems to be the most brutal of all to remove for those who are sensitive to psychotropic drugs.

 

It is also a time when the brain is saying get rid of it, and the chains it imposes, whilst at the same time it is now without a therapeutic dose, and struggling as repair and return to balance can take a long time, and so the choice is either taping many months on the drug in the hope that repair will happen, with minute drops, or removing it and then letting the brain heal,  with the subsequent shock,

 

It is a hard decision to make because we are all so individual, so many different factors are involved

 

I am at a loss what to do but ever conscious of the time already spent on the drug for a relatively short term low dose us, and at an age that it is far from safe to take it, 

 

I really am struggling now with the last drops and do feel it, Not because I gain anything taking, but I do feel it's loss

 

Fear is so strong in all of this for many reasons, I am really struggling with this.

 

I do hope I can deal with this, as my old brain is really suffering,  but I also believe that there is a chance of recovery when free , just what speed to I break free,

 

My dose so minimal now it is hard to judge what to do, I  fear taking it for months and it doing nothing to ease the time of repair work, and I fear stopping it and spiralling deeper into whatever it throws at me.

 

I do hope I am doing the right thing, I am no gambler,  I guess in this there is no right or wrong, Just fear of making  a mistake,

 

Thank you so much Cant, 

[[va...]]

I agree with Cants approach. I think it's safer.

[[Gr...]]

Chinchuck- How are you doing today?