Tapering off Diazepam - never had stable dosage

[[Ni...]]

I just spoke to a GP.

He wont believe me and kept repeating the bull the Cardiologist wrote.

 

He said I should start taking the Diazepam at 2mg x3 a day. I told him I was trying to come off it and how it makes me suicidal at those doses.

He still thinks I should take it.

Thinks my inability to stay upright is an anxiety issue.

 

I tried to explain about my M.E. and Autonomic Nervous System dysfunction it creates.

He didn't want to know.

 

I give up.

 

I dont know whats happening to me and no doctor believes me that anything is actually happening.

 

Im sorry I bothered you on this forum.

 

I will delete my account later.

I can only apologise for wasting your time, but thank you for being so nice and trying to help me.

[[Ch...]]

Please don’t give up because I will have to give up also. Let’s be there for each other. What is ME. I am having severe symptoms also and I have not touched my dose. 

[[Pa...]]

@[Ni...], I hope you won’t leave and there is no need to apologize, you haven’t wasted our time.

I wish we could help you figure out what’s happening, I’m sure you feel abandoned by the medical community.  

I don’t know what is causing your symptoms, but we’re here for you if you want to talk. 

[[Mi...]]

Where are you based about? If in England or Wales I believe postscript 360 might help you

[[Mi...]]

Please remember that many medical people will not acknowledge withdrawal and its symptoms.

 

[[Ch...]]

My psychiatrist said there was no such thing as tolerance. All in my head. Is taper scgudyjevis 0.5 mg every 10 days. 

[[Ni...]]

On 18/09/2023 at 15:32, [[C...] said:

Please don’t give up because I will have to give up also. Let’s be there for each other. What is ME. I am having severe symptoms also and I have not touched my dose. 

M.E. is Myalgic Encephalomyelitis.

[[Ni...]]

On 18/09/2023 at 21:23, [[P...] said:

@[Ni...], I hope you won’t leave and there is no need to apologize, you haven’t wasted our time.

I wish we could help you figure out what’s happening, I’m sure you feel abandoned by the medical community.  

I don’t know what is causing your symptoms, but we’re here for you if you want to talk. 

I dont know why everything got so bad on 31 August.

In hospital I was told I was dehydrated, I got a little better from being on all the fluids but only a little.

Is it accumulation of the Diazepam from being dehydrated?

Is it withdrawal?

Do I have to go up in dosage to help because its been 3 weeks?

But if this is accumulation I will just get worse. 

At 2mg doses it makes me suicidal.

 

Or it's my M.E. and not the Diazepam at all.

Im such a mess, I dont know whats causing this and therefore what to do about it.

And all the GPs have different answers.

Stay the course, up your dose, stop the meds, its not the meds.

 

I hate this and its making me feel even more of a mess.

And I know there's nothing anyone can do to help me and I feel like Im hassling people on here.

[[Ni...]]

10 hours ago, [[M...] said:

Where are you based about? If in England or Wales I believe postscript 360 might help you

Im in England, I dont know what postscript 360 is.

10 hours ago, [[M...] said:

Please remember that many medical people will not acknowledge withdrawal and its symptoms.

No they dont. 

Ive asked for help, asked if this is withdrawal, accumulation from dehydration or my M.E. Or all of the above.

 

Always different answers, none of them know about M.E. and only one had a little knowledge of diazepam.

 

I spoke to an addiction charity yesterday but they couldn't help because none of them are doctors and dont know about diazepam.

[[Ni...]]

10 hours ago, [[C...] said:

My psychiatrist said there was no such thing as tolerance. All in my head. Is taper scgudyjevis 0.5 mg every 10 days. 

That's terrible but not surprising.

So many people out there working in healthcare who know nothing about things they should.

Finding a healthcare professional who knows about benzos must be like finding a unicorn.

The same goes for any doctor knowing about M.E.

[[Ni...]]

I think I have had withdrawal symptoms the whole time Ive been taking it since April.

Thats why I was using higher doses at times. Which Ive been doing on and off for the last 2-3 years as well.

 

Ive taken 1mg a day everyday for 2 weeks.

Today I took 0.5mg.

 

I will find out the hard way over the next fortnight whether this is withdrawal or constant withdrawal the whole time. Or something else or all of the above.

 

Something people should know.

If you are having any tests for you vestibular system, dont have any benzos in your system because it nullifies any results because it's a vestibular suppressant. 

Basically anytime your eyes are being watched for movement and reaction in conjunction with the vestibular system. Benzos supress and give false results.

 

Just had a whole set of tests rescheduled for when its hopefully out of my system for this exact reason.

[[Pa...]]

How are you doing taking the .5 mg each day?

[[Ni...]]

2 hours ago, [[P...] said:

How are you doing taking the .5 mg each day?

Wednesday 20th 0.5mg

Thursday 21st 1mg

Friday 22nd 1mg

Saturday 23rd 0.5mg

Sunday 24th 0.5mg 

I hope to continue for 2 weeks with 0.5mg then stop.

 

Thursday 21st night I got hit by big increase in dizziness for 3-4 hours.

My constant dizziness has been getting worse since then.

 

The dizziness was better last Sunday 17th and Monday 18th after being in hospital on multiple drips.

The dizziness then started to get worse Tuesday 19th onwards, getting to its worse today Sunday 24th.

 

I wonder if the multiple drips flushed alot of the accumulated diazepam out of my system. And thats why I started to feel better.

Part of me wants to just stop the diazepam now and see if I start to feel better as it leaves my system. But Im too scared to jump from 1mg.

 

The question is, is it withdrawal or is it just the fact its in my system and needs to go?

 

Thanks for the checkup.

Sorry about my post about leaving, was feeling really down then.

 

Edited September 24, 2023 by [Ni...]
dates

[[Pa...]]

There is so much we don’t know and the really unfortunate aspect of this is we have to experiment on ourselves to find the answers.  I wonder if it’s time to take the plunge, to find out if your theory is right and get off the drug?  It could open up a whole new chapter or it could make things worse, I wish I knew. 

Could remaining on this last bit of diazepam be preventing you from fully starting the healing process or would this exacerbate your other issues?

Do you know the content of the “drips” you received in the hospital, it would help us to know since we’ve seen some comfort medications offered to those in benzodiazepine withdrawal can be effective.  

Your dizziness is common, we have many members dealing with it but I can’t know if yours is being caused by the Valium. Your dehydration concerns me, are you keeping up with your fluids? 

[[Ni...]]

This is what I keep going over and over in my head. Come off it now or stay on the 0.5mg for 2 weeks.

 

I was on Hartmanns Solution 3-4 bags over approx 15 hours - I was told I was dehydrated. I couldn't drink while I was in there because I was on a ward and had to keep my mask on. So Im glad I had the drips, otherwise I would have got more dehydrated.

I had been drinking enough, but I had gone nill by mouth in August for 24 hours. Ive been drinking enough since coming out of hospital though.

 

Ive just found read on my discharge sheet that my chest x-ray showed - at the base of my left lung, a band of Atelectasis (collapse). And I should be treated for infection and re x-rayed in 6 weeks. Except I was told my x-ray was clear!

 

pdf is for IV solution I was on

1085248.pdf

Edited September 24, 2023 by [Ni...]
description for pdf attachment

[[Pa...]]

I’m glad you’re staying hydrated now, it looks like the Hartmanns is the typical they give everyone but it’s odd they told you your x-ray was clear. Are you going to follow up about that?

[[Ni...]]

Ive finally been able to get a GP to talk to me about x-ray. They dont think its infection because of blood work. Hope it will resolve on its own.

 

Doctor said I shouldn't be cutting pills because you cant guarantee how much of the active ingredient you are getting in each piece.

Said some pieces could be all filler and no medicine.

 

Said to take 1mg every other day for 2 weeks and then stop. Or just stop now because 1mg is such a low dose.

 

I wont be taking anything today. But unsure if I should just continue with not taking anymore or if I should do 1mg every other day for 2 weeks and then stop.

[[Pa...]]

I’m glad you were able to speak with your doctor about the x-ray, will you have a follow up to see if it resolved?

Diazepam has such a long half life, you should be fine taking it every other day if that’s what you decide to do.  

 

 

[[Ni...]]

Im am going to have to ask for another x-ray to get it checked.

 

I thought missing a day was bad because then our system levels arent consistent?

[[Pa...]]

33 minutes ago, [[N...] said:

I thought missing a day was bad because then our system levels arent consistent?

This is true but I’m hoping that since Valium has such a long half life and you’re so low in dose this will be a smooth transition for you. But, you should do what feels right to you,  its important to feel confident in the method we choose because doubt can cause stress and stress will cause symptoms. 

[[Ni...]]

Oh ok.

Im really stressed all the time anyway. We are way past worrying about stress.

 

I dont want to go into bad withdrawal.

 

My doses varied between 2-4mg and it was taken all over the place.

Ive taken 1mg everyday for just over 2 weeks.

Three days of 0.5mg.

Nothing today.

 

Now Im stuck between stopping or taking 1mg every other day, then stopping.

 

Its so hard to know what is right, no one can help because everything is all over the place, no one can know.

 

Thank you for being here to help me talk it out.

Still unsure what to do.

[[Ni...]]

I think Im going to stop.

 

I hope being on 1mg everyday for 17 days was long enough to create the baseline I was told to make.

 

Now Im not taking anything Im scared, Im panicking all the time about whether this is the right decision. Am I going to start going into bad withdrawal.

Now my heart rate is in the high 80s all the time and I cant stop shaking. 

Edited September 27, 2023 by [Ni...]

[[Pa...]]

It’s scary to come off the drug that has been a help but also a curse, I’ve seen lots of mixed emotions.  

What I’m predicting for you is more of the same, I don’t think there are any symptoms lurking at there that you haven’t already experienced, I believe what you’ll feel will just be a continuation of your taper.  At least, this is what I’ve seen from other members.  They may be more intense, or they may not be but I truly don’t think it’ll be anything you haven’t already dealt with.

[[Ni...]]

3 hours ago, [[P...] said:

It’s scary to come off the drug that has been a help but also a curse, I’ve seen lots of mixed emotions.  

What I’m predicting for you is more of the same, I don’t think there are any symptoms lurking at there that you haven’t already experienced, I believe what you’ll feel will just be a continuation of your taper.  At least, this is what I’ve seen from other members.  They may be more intense, or they may not be but I truly don’t think it’ll be anything you haven’t already dealt with.

I think Ive started experiencing intense symptoms.

What sort of time frame do these have?

I know everyone is different, but is there like a ball park sort of thing?

 

My body seems to recognise a change in 4-5 days.

 

I started getting bad last night, which is 4-5 days after me starting the 0.5mg.

Saturday will be 4-5 days after me stopping, which means I will get even worse.

[[Ni...]]

Though I had an attack like this, last Thursday, it lasted several hours. So maybe its not withdrawal.

 

I had a blip of feeling better 17 & 18.  Which I figured was the drips I was on while in hospital.

I started to go downhill again after that to reach the bad point I'm at now. 

 

If being on this drug is making me bad there is no way of telling when something is withdrawal.

So going back up a dose wont make anything better.

 

So just stopping is the only way to start getting better, fingers crossed.

 

All these years where I would take 2mg or 4mg a couple of times over 2 weeks. Then not take anything for 1-3 weeks.

My body must have been going into withdrawal on the regular.

And that doesn't even take into account how I started taking it in April this year onwards.