☼ OldDodgy: How I got off Pregabalin, quetiapine, mirtazipine

[OldDodgy]

@Frogie

Thanks 

I went to profile in error 

Then saw settings and Copied and Saved on Mac before changes made. 
thanks again 

OD

[Frogie]

@OldDodgy

 

You are welcome.

 

Glad I could help

[Comfyquilt]

Hi @OldDodgy-

I see your coming off valium too? I am as well, albeit slowly. This will be my second taper as I couldn’t seem to let the last fumes go last time. Reach out if you ever want to chat! 

[OldDodgy]

Thanks @Comfyquilt

Its likely to be a year before my next drop-)) coming off three sedative psychotropic meds in two years has left me wide open to setbacks. 
good luck 

OD 

[Comfyquilt]

@OldDodgythats quite the feat. I hope your hanging in there and reminding yourself what an amazing thing you’ve done 

[OldDodgy]

@Frogieand friends. 
On a positive note I have managed for over a month to stick to just 17.5 of diaz) Except two occasions. I hope the excesses over Christmas are now history.

I have had less night terrors and now getting almost 5 hours sleep. 
The psych was v keen I take 25 of quetiapine at night but I only take 12.5 

 

However I feel very fragile. I friend up the road is still extremely ill but at last under the crisis team but I get a lot of transference from her persistent texting. I find a lot of SA posts trigger my acute anxiety as do letters and cold calling. 
The worst thing is the agoraphobia. I can push myself to swim perhaps three x a week but will have a day in bed after. TV advertising for holidays are massive triggers as I haven’t been away for 7 years.  
My counsellor is very sound but I don’t want to be addicted to her reassurances. 
My Gp has no answer to the severe cluster headaches! 
I feel like there is no solution to this pain and fatigue. 
Perhaps it’s just a protracted wave? 

Either way it’s not very nice just at the moment. 
All the Best 

OldDodgy. 

 

[Knosretep]

50 minutes ago, OldDodgy said:

@Frogieand friends. 
On a positive note I have managed for over a month to stick to just 17.5 of diaz) Except two occasions. I hope the excesses over Christmas are now history.

I have had less night terrors and now getting almost 5 hours sleep. 
The psych was v keen I take 25 of quetiapine at night but I only take 12.5 

 

However I feel very fragile. I friend up the road is still extremely ill but at last under the crisis team but I get a lot of transference from her persistent texting. I find a lot of SA posts trigger my acute anxiety as do letters and cold calling. 
The worst thing is the agoraphobia. I can push myself to swim perhaps three x a week but will have a day in bed after. TV advertising for holidays are massive triggers as I haven’t been away for 7 years.  
My counsellor is very sound but I don’t want to be addicted to her reassurances. 
My Gp has no answer to the severe cluster headaches! 
I feel like there is no solution to this pain and fatigue. 
Perhaps it’s just a protracted wave? 

Either way it’s not very nice just at the moment. 
All the Best 

OldDodgy. 

 

 

Hi @OldDodgy

 

So sorry to read about the bad stuff still happening! You've been through so much so it's understandable you're feeling so fragile.

 

That's great you're keeping the Diaz down and are experiencing less terrors and better sleep!  I think you said you were around 3 hours before so that's a huge improvement for such a short time.

 

I've read numerous threads where people have constant headaches like you mention.  Hopefully that will let up for you soon.

 

Keep your chin up, my friend!

 

Edited March 7, 2022 by Knosretep
Add space

[Onmyway]

8 hours ago, OldDodgy said:

@Frogieand friends. 
On a positive note I have managed for over a month to stick to just 17.5 of diaz) Except two occasions. I hope the excesses over Christmas are now history.

I have had less night terrors and now getting almost 5 hours sleep. 

The psych was v keen I take 25 of quetiapine at night but I only take 12.5 

 

This is good news OldDodgy, you are stabilizing and keeping to a dose. The improved sleep will have its own positive ripple effects. This is cause for celebration. 

 

8 hours ago, OldDodgy said:

However I feel very fragile. I friend up the road is still extremely ill but at last under the crisis team but I get a lot of transference from her persistent texting. I find a lot of SA posts trigger my acute anxiety as do letters and cold calling. The worst thing is the agoraphobia. I can push myself to swim perhaps three x a week but will have a day in bed after. TV advertising for holidays are massive triggers as I haven’t been away for 7 years.  

It is OK to take a break from always helping. I had a friend who did this as well and I told him I had to withdraw because I simply wasn't able to help at this time. I also understand the cold calling part - my phone is permanently on silent and people who know me know that I am not going to pick up the phone and only do texts/whatsapp. It is also ok to take a break from SA. I stuck to the Symptoms and Self Care portion of the site until I became a moderator - I simply couldn't handle so much misery and my own anger at the incompetence of doctors. That all goes away with enough holding. 

 

8 hours ago, OldDodgy said:

My counsellor is very sound but I don’t want to be addicted to her reassurances. 
My Gp has no answer to the severe cluster headaches! 
I feel like there is no solution to this pain and fatigue. 

 

I wouldn't worry about being addicted to the reassurances, it is what you need now and when you feel better you will not need this. I am still amazed at what a difference a window makes. I think you need a window soon to be reassured. It is good that you are swimming and that it provides a way to reconnect with the world. Do as much as you can. Be kind to yourself. 

 

For the cluster headaches, do you  think some shoulder/neck exercises might help? I often get headaches from bad posture. Yours might be from the medicines/withdrawal rather than physical but it might help to investigate. Are you able to take epsom salt baths? If it is muscular they may  help? I have also been 'friends' with fatigue during waves and it also has gone away for me. It resurfaces from time to time but it is temporary, pls remember that. 

 

Right now what your body needs is more consistency, stability and patiently waiting and faith that it will get better. It will get better. I am not just saying it - this is based on my experience and many others like us that I have seen on this site over the years.  I would be as gentle as possible and avoid all the triggering situations. In normal anxiety avoidance/distraction is not good as it solidifies the fear but with withdrawal it is the way to go because the fear is just your system being hypervigilant. My hyperacusis that made being inside the apartment terrible has disappeared this week, just like that. Your symptoms too will get better. 

 

Also give credit to your body for all it's been through in the last years. There have been LOTS of changes. Even though you stopped some of the meds at the end of last year, in recovery time that is not very much. Remember to celebrate that and give your body a chance to catch up. 

 

Sending you wishes for lots of windows!

[Lovetobefree]

On 3/7/2022 at 1:09 PM, Knosretep said:

 

Hi @OldDodgy

 

So sorry to read about the bad stuff still happening! You've been through so much so it's understandable you're feeling so fragile.

 

That's great you're keeping the Diaz down and are experiencing less terrors and better sleep!  I think you said you were around 3 hours before so that's a huge improvement for such a short time.

 

I've read numerous threads where people have constant headaches like you mention.  Hopefully that will let up for you soon.

 

Keep your chin up, my friend!

 

Hi OD, 

I'm so sorry to hear you have been going through such hard times.  

Pleased to hear you are now getting more sleep and that your friend is now being helped too.

Thinking of you.

Best regards

[OldDodgy]

On 3/2/2022 at 4:21 AM, Comfyquilt said:

Hi @OldDodgy-

I see your coming off valium too? I am as well, albeit slowly. This will be my second taper as I couldn’t seem to let the last fumes go last time. Reach out if you ever want to chat! 

@Comfyquilt

Thanks. I think diazepam is uniquely foul in its make up.  In the last 50 years I have bounced from as little as 5 to a max of 30.  Most of this time I was covered by ADs.  
Holding to 17.5 has been a massive challenge because my psych is a strong believer in just taking an extra tab as required. We now know about kindling.  She doesn’t! 

However after 60 years of being phobic/ anorexic and constantly anxious, I feel that may be my future, even though I have counselling and all the other tricks for anxiety-).  
The hope is of course that the receptors will recover after all this time.  I wonder if with the strain of Brexit, Covid and now Putin whether it is unsurprising that many of us feel overwhelmed at this time!  

 

Thanks also to OMW, LTBF Knor and others for the back up. 
 

Yours OldDodgy 
 

 

[OldDodgy]

@OldDodgy

 

Its only fair to report in that the helpful posts from friends have had a positive effect- minor but small steps?  
 

I admitted defeat and now accept 12.5 of quetiapine at night as a necessary evil- and for the first time in years getting 4-5 hours sleep.  
 

Furthermore I have not cheated on the benzo or needed the Buccastem much. The headaches are resolving too!! 
 

I can now shop locally and swim every day without panic. 
 

There are still very lonely and phobic days. My sibs family are real triggers with their “pull yourself together hints”, and chats about their cruises etc!!! . They make me feel a complete failure. 
 

Aiming to try a small diaz drop of 5% shortly. 
 

Love the gentle support thanks!

 

OldDodgy 

 

[Onmyway]

This is great news @OldDodgy. I am a firm believer that holding is helpful in two ways - 1) it gets you to some level of stability where you can make better decisions about withdrawal instead of doing things out of desperation. 2) you experience a window of some normalcy which can renew hope and give you a glimpse of what the future may hold

 

Just to be extra sure, I'd hold for one more month before you lower even by 5%. The more stable you are the easier the drop will likely be. You're in no hurry so better to set yourself up for success.

 

So glad you can do at least some of the things you enjoy and are getting some sleep.

[Knosretep]

On 3/25/2022 at 4:15 AM, OldDodgy said:

@OldDodgy

 

Its only fair to report in that the helpful posts from friends have had a positive effect- minor but small steps?  
 

I admitted defeat and now accept 12.5 of quetiapine at night as a necessary evil- and for the first time in years getting 4-5 hours sleep.  
 

Furthermore I have not cheated on the benzo or needed the Buccastem much. The headaches are resolving too!! 
 

I can now shop locally and swim every day without panic. 
 

There are still very lonely and phobic days. My sibs family are real triggers with their “pull yourself together hints”, and chats about their cruises etc!!! . They make me feel a complete failure. 
 

Aiming to try a small diaz drop of 5% shortly. 
 

Love the gentle support thanks!

 

OldDodgy 

 

 

@OldDodgy 

 

Awesome to hear about the improved sleep and lessened headaches!  Keep getting those swims in and between that and the sleep you'll make some solid healing progress!

 

Don't worry about your sibs family....I doubt they've been through even a 1/10th of what you've been through.  You're doing great!  Keep it up!

[OldDodgy]

@Knosretep

 

Thank you for your king words. 
I have swum every day for a week though I felt a bit groggy but not anxious. 
I tested negative for Covid for 5 days but positive yesterday. 
Hey ho. 
Yours 

OD

[Onmyway]

Sorry to hear about the positive Covid-19 test @OldDodgy. How are you feeling? All the people I know who have gotten it after being jabbed (esp the UK presumably omicron) have had it pretty much only as a generally mild cold. Hope yours is the same. Be extra gentle with yourself. I know you know but many of us have such a hard time with self care or prioritizing our own health!

 

Pls keep us updated!

OMW

[OldDodgy]

@Onmyway

 

Thanks for your thoughts 

I was fully jabbed but waning immunity. 
I have to say the sore throat was dire for two nights. 

Unfortunately because of my compromised lungs the oxygen levels were low enough to be admitted but after trying to get a bed sorted I gave up! We are also supposed to have antivirus tabs if vulnerable but they didn’t answer! 
 

Anyway I stuck it out here because the agoraphobia would have had a set back and I am very keen to stabilise. 
 

So a bit better today thank you. 
 

Chin up

 

OldDodgy 

[Onmyway]

Good to hear things are getting a bit better and sorry to hear about the trouble getting a bed and proper care. Do you have supplemental oxygen at home? Can you use it? Do you have steroids? I am not a doctor but I remember that dexamethasone was quite useful and suspect that if you had inhaled steroids they might help as well. Not sure at what stage of severity they start helping. 

 

I have been struggling with low oxygen after moving to a very high altitude recently but it is climbing up which amazes me every time at the body's ability to heal and adapt and gives me hope for our nervous system as well. Is yours improving/stable even if low?

 

Do you have people on call who can advocate for you if you get worse? I am hoping you won't but my anxious brain always makes me think in terms of contingencies. Do you have pre-prepared dosages of your medicines in case you need to be admitted? They might mix up your dosages if you need to be admitted (so much can go wrong in hospitals, unfortunately).

 

I am hoping things will continue getting better. Keeping you in my thoughts, 
OMW

[OldDodgy]

@Onmyway

 

Sadly in this part of the U.K. our docs don’t do on call. We are referred to a number which didn’t answer. 
Otherwise we ring for an ambulance and lie on a trolley for hours til seen! 
 

I have a steroid inhaler and months of meds packed in case things get worse. We self dispense in Essex to save money!! 
 

Don’t worry—I am improving and I have two very daughters to frighten the medics!! 
 

I know you wanted me to hold on the diazepam but am going to try and reduce by about 5%.  I only get 5 mg tabs from Gp so it’s a bit hit n miss.  
 Will report in.

 

OD 

[Onmyway]

@OldDodgy seems like you are in good hands so far - your own and the GP's. 

 

However, while it is ultimately up to you, I'd very strongly encourage you not to do any reductions for the next month. Before Covid it was probably just a 'good to get a bit better' but given how Covid frequently destabilizes healthy people's nervous system and how much extra your body needs to work - incl withdrawal and the lung issues, I really want you to be careful. A 5% decrease won't get you very far anyway but it might set you back. Ultimately your decision but do allow your body to stabilize from the Covid before you give it another challenge. 

 

When you do decide to cut, you could perhaps consider liquid dilution so as to get precise measurements. Or do you have a scale. Many of our members have used jeweler's scales off of Amazon. There are some inexpensive ones that you can calibrate. You have to then remember that the pill weight and the diazepam ingredient weight are not the same since the pill has fillers and you will need to calculate the right pill weight for the amount of diazepam chemical you need. I can help you more with that when the time comes. 

In the meantime, do take care of yourself!

OMW

[Frogie]

@OldDodgy

 

I would not taper the diazepam at this point. Your body is too sensitized by having COVID and would just add fuel to the fire.

 

As I stated before, You should hold on the 17.5 mg for quite a while because you went up and down way too many times.

 

You need to heal from the COVID and hold for a bit before thinking about tapering the diazepam.

 

 

[OldDodgy]

 

 

Thank you @Onmyway and @Frogie  

 

I note you reservations about starting a reduction at this time.  Of course right at the moment I feel physically shocking with Covid and have been hoofing the paracetamol and ibuprofen.  
 

With regards to the last three months I have stopped the twenty years of prn oxazepam 10mg (used about three x a week)  since Feb 1st, and stopped the extra 2.5- 5mg of diazepam I took for two weeks in December due to major life events.  
 

I now have a face to face counsellor and am shopping and swimming and even able to eat now without gagging.  I am driving again. 
 

As you know I have three compelling reasons for reducing diazepam. 
 

Firstly my respiratory consultant finally agreed that the polycythaemia and resultant emboli were a result of hypoventilation from sedation. 
 

Secondly in the UK there is a move to stop benzo prescribing in the over 65s. My GP is resisting this but as you know pregabalin was cut off at the knees last year. She may not have a choice soon. 
 

Thirdly - On my last two hospital admissions diazepam was delayed and essentially I went TK which was truly scary.  
 

Perhaps it is best to see if I avoid any long Covid problems.  However I am under no illusion that the main problem I have to cope with is  bereavement and long term chronic pain. 
 

I appreciate your advice to be cautious of course.  
 

Yours 

 

OldDodgy 

[ChessieCat]

6 hours ago, OldDodgy said:

I know you wanted me to hold on the diazepam but am going to try and reduce by about 5%.

 

I can understand you reasons for wanting to start tapering the diazepam.

 

If you do decide to go ahead then my suggestion would be to start with a test reduction of 1%.  This will give you an idea of whether tapering is going to cause any issues.

[OldDodgy]

@CheshireCat

3 hours ago, ChessieCat said:

 

I can understand you reasons for wanting to start tapering the diazepam.

 

If you do decide to go ahead then my suggestion would be to start with a test reduction of 1%.  This will give you an idea of whether tapering is going to cause any issues.

 

Thanks CC.  As you will see @Frogieand @Onmyway have urged caution as in the middle of Covid.  I haven’t had a panic attack for a good while.  
 

However I woke at 3 am with low oxygen sats and high temp. I admit to being terrified for 5 mins until I could get my breath. So it would seem that their views are correct in that I need to be weeks down the line before any type of taper.  
 

I good thing is that I haven’t reached in the drawer for oxazepam to deal with what is a physical relapse and I can now see the difference. I feel perfectly calm although I live alone and am physically pretty week.  
 

Thanks friends

 

 OldDodgy 

[Knosretep]

Hey @OldDodgy

 

Sorry to hear about the Covid.  Hopefully its just a few days and doesn't cause further problems so you can get back to tapering the V.

 

Best of luck....rooting for you!

[OldDodgy]

@Knosretep

 

Hi 

Thanks for support. Now day five since positive test.  
 

sadly have been unable to access supplemental oxygen, antivirals etc as local system overwhelmed. Doc not returning calls. 
 

Quite hypoxic at night and pretty weak. Live alone as you know, but have food. 
 

Headaches and confusion now less frequent, but night terrors reflect low oxygen levels. 
 

Holding taper as advised. 
 

Hey ho. 
 

OldDodgy

[Valerio]

Hi @OldDodgy

 

I'm Sorry about the Covid. I Hope you feel better soon!🍀

 

Val.

[OldDodgy]

@Valerio

 

Thank you so much for your good wishes. Our town has the highest rate in the country near enough. I waited three days to speak to a doctor. It’s not a nice illness and definitely effects one’s thinking ability!! 
 

Fortunately the Mods on here were able to remind me to hold my taper until fully recovered. 
 

I wish you well 

 

OD 
 

 

[Scrountz]

@OldDodgy

 

I'm sorry to hear you've caught Covid. Wishing you a swift recovery.

[OldDodgy]

Thanks @ScrountzDay ten. 
 

unfortunately have severe fatigue 

 

Can just get to loo and managed a piece of toast. Awful myalgia toothache and headache. 
 

Tricky living alone. Hope it resolves soon. Bit like a severe wave. 
 

OD 
 

[Blossom71]

Hi @OldDodgy

I hope it's ok to ask you this here.   My cat was in hospital for a few days and they have given him Gabapentin. I am not sure whether the vet saw my eyes go like dinner plates when she said that but i knew that there were plenty of people on here having trouble with it etc, and I'm not very happy him taking something that I probably wouldn't take myself!

Anyway, with a bit of googling apparently it's got a similar mechanism of action as pregabalin and requires tapering.   He's on it for pain and I have no idea how long they'll want him to stay on it but I assume it's wise to taper off?   There are plenty of cat websites suggesting it needs to be tapered but it's mainly talking about cats who have been it a while and have been prescribed it for seizures.  Any thoughts?

 

P.S.  I know this is website for people but i figured out that here was probably the best place to get the best advice.

[OldDodgy]

@Blossom71

I think the SA rules prevent us from giving advice-) 

What I can say is that I dog walk with two chaps with labradors and they say Gabapentin gave their dogs a new lease of life. 
Obviously they won’t ever come off it!  
OldDodgy 

[Blossom71]

@OldDodgy

My cat will just be on it short term as it's for an injury. I was just concerned that stopping to abruptly appears to cause seizures.  I guess I'll just wing it and hope for the best.

[Onmyway]

7 hours ago, OldDodgy said:

Thanks @ScrountzDay ten. 
 

unfortunately have severe fatigue 

 

Can just get to loo and managed a piece of toast. Awful myalgia toothache and headache. 
 

Tricky living alone. Hope it resolves soon. Bit like a severe wave. 
 

OD 
 

Hi @OldDodgy, 

I am sorry you are struggling with fatigue - for me that part went for 6 weeks (this was pre-vaccines). The best remedy was to just follow my body. Rest when you can, as much as you can the usual stuff. It is a full-body illness not just a URI. 

 

Take good care of yourself, 

OMW

[OldDodgy]

@Onmyway

Thanks 

Lots of sleep.  
just walked the dog a mile slowly and time to flop. 
food tastes awful!! 
OD 

[OldDodgy]

@Frogie and @Onmyway

 

It seems this Covid thing effects some folk badly. Fortunately I have not done any reductions and won’t for sometime, esp with a history of Cfs.

 

I am so disappointed that the 3 am waking is back with night terrors again. Often followed by a day of panic. It has been very tempting to grab some diazepam but resisted. 

Got up today after further three days in bed. Did about 20 min chain sawing, now dizzy, nauseated with thumping headache. 
I see @Frogie has said in another thread that a rescue dose of benz would be allowed. But would it help? 
 

I know it’s only day 13 but I am pretty certain the two week window was slammed shut once the virus hit. I accept it’s a struggle and I must cope til the next window. 
 

Hey ho. -))

 

OldDodgy 

 

 

 

 

[Lovetobefree]

3 minutes ago, OldDodgy said:

@Frogie and @Onmyway

 

It seems this Covid thing effects some folk badly. Fortunately I have not done any reductions and won’t for sometime, esp with a history of Cfs.

 

I am so disappointed that the 3 am waking is back with night terrors again. Often followed by a day of panic. It has been very tempting to grab some diazepam but resisted. 

Got up today after further three days in bed. Did about 20 min chain sawing, now dizzy, nauseated with thumping headache. 
I see @Frogie has said in another thread that a rescue dose of benz would be allowed. But would it help? 
 

I know it’s only day 13 but I am pretty certain the two week window was slammed shut once the virus hit. I accept it’s a struggle and I must cope til the next window. 
 

Hey ho. -))

 

OldDodgy 

 

 

 

 

@OldDodgy  I'm sorry to hear you are still not in a great way.  You are not alone.  Although I'm suffering different symptoms.  Take care of yourself.  Sending much love