Lukielass: occasional use Diazepam 18 years - need help to reinstate please

[Lukielass]

Hi everyone. This is my first post. I have gotten so much help from this website over the years. I have had several successful tapers over the last 6-7 years and am currently tapering Zeldox 40mg, down to 2.25 currently.

 

I think I have become dependent on Diazepam over the last 18 years. I have used it only occasionally, 5mg, a few times a week. Sometimes I increased my dose to twice (10mg) a day for about 3 weeks at a time and never had a problem immediately dropping back to 5mg a few times a week. 

 

I thought I wasn't dependent on it since it was mostly only occasional use so I tried stopping cold turkey on 20 Feb 19. It's been 9 days and I am currently experiencing terrible debilitating fatigue, dizziness and gut issues. I have occasional debilitating brain fog and my TMJ has gotten much worse too. I tried eliminating foods I think I'm sensitive to and I'm kinda in two minds about if this is gut related (I have IBS and probably leaky bowel syndrome) or if it's Diazepam withdrawal. I'm tending toward the latter currently. However, my nausea insomnia and anxiety are a bit better since stopping diazepam, which is strange for diazepam WD.

 

I was thinking about starting up diazepam nightly, maybe .75 mg to see if I could get any withdrawals under control and then eventually tapering once I'm off zeldox. 

 

Any comments about if that's a good dose to stabilise any WD issues? It's so hard to figure out what dose to go on cause I've used it so randomly in the past. And I'd like to go on as small of a dose as possible obviously. 

 

Any help would be much appreciated.

Edited March 1, 2019 by Shep
added username to title

[Shep]

Hi, Lukielass. 

 

Welcome to Surviving Antidepressants. Please note I moved your post from the benzo forum to the main forum. Since you are on more drugs than just a benzo, it will help to get you started off in the main intro area. 

 

Valium has a half-life of up to 200 hours or 8 days. So the fact you are getting hit so hard with withdrawal is an indication that you are dependent, even with periodic use. Since you stopped 9 days ago, you still have close to 50% of your last dose in your system, depending on how fast you metabolize it. 

 

Benzo reinstatements work best within 2 - 4 weeks within coming off, so you are well within that timeframe and can safely reinstate. 

 

3 hours ago, Lukielass said:

I was thinking about starting up diazepam nightly, maybe .75 mg to see if I could get any withdrawals under control and then eventually tapering once I'm off zeldox. 

 

This sounds like a great plan. You could start this low and then increase as needed, not to exceed the dose you started out on. 

 

The other issue is your periodic use. It's very hard to taper off a drug that's being used periodically. Since you already know you are dependent, you may want to find a dose you're comfortable with and take it every day at the same time every day. You may not need the full 5 mg with every day use. With Valium's long half-life, the drug accumulates, so start out low and over the next few days, see if you can reach a dose up to 5 mg that will resolve your symptoms. 

 

Here is some information on benzo reinstatements:

 

Benzosupport.orge - Notes on Benzo Reinstatements

 

About reinstating and stabilizing to reduce withdrawal symptoms 

 

Please continue to use this thread to document your taper and to ask questions. Let us know over the coming days how you're feeling as you reinstate. 

[Lukielass]

Thank you so much Shep. I read the articles too thank you. 

 

I took .75mg diazepam before bed last night and I had pretty bad insomnia last night. I’m starting to develop muscle spasms in my legs and my anxiety has picked up. My Tmj is really terrible too. I am very achy as well. Overall I think I feel worse since my dose last night, although it’s still early in the day here. 

 

How long should I wait before deciding to up my dose from .75mg?

 

And you suggested possibly going up to a max of 5mg a night but I was only taking maybe 10mg a *week* previously.  Wouldn’t 5mg a night (35mg a week) be going backwards?

 

And can I take 5mg just once today to alleviate the wd symptoms?

 

Sorry I have so many questions and am really scared especially from feeling worse this morning. 

 

Any further help would be appreciated. 

 

Diazepam is a serpent and I had no idea till now that I was dependent from occasional use. 

 

[ChessieCat]

10 hours ago, Shep said:

 

You may not need the full 5 mg with every day use. With Valium's long half-life, the drug accumulates, so start out low and over the next few days, see if you can reach a dose up to 5 mg that will resolve your symptoms. 

 

 

Please re-read what Shep wrote.

 

[Lukielass]

Thank you ChessieCat. I reread Shep’s message after the brain fog lifted this morning and it makes more sense. 

 

 

15 hours ago, Shep said:

 

The other issue is your periodic use. It's very hard to taper off a drug that's being used periodically. Since you already know you are dependent, you may want to find a dose you're comfortable with and take it every day at the same time every day. 

 

Yes, I’m going to try the .75mg/night dose for a few nights to see how I react. Then I will up my dose accordingly and take that dose the same time each night once I’ve found the right dose to alleviate the wd. 

 

Question: Because I’ve used diazepam periodically, can you point me in the right direction for how to taper a drug that’s been used periodically? How hard is it to get off exactly? Been trying to search the forum without much luck. 

 

I’m determined to get off these drugs once and for all. 

 

Thanks again Shep and ChessieCat. 

[savinggrace]

Oh Lukielass,

 

Try really hard not to up-dose too much.  Try to get the clearest picture of what your dosing really was prior to Feb. 20.   It sounds a little vague; 5 mg. a couple times a week but sometimes 5-10 mg. a day for 3 weeks is very, very different.  I am guessing .75 may not be enough to get stable but updose slowly if you have to.  As Shep and Alto and anyone who knows knows, it takes time for this stuff to catch up with you in both directions....updosing or tapering.

 

Best of luck.  Looks like you have had done your share of tapering some pretty tough drugs successfully.  That said, even though none of those drugs are benzos, your brain has been working very hard for quite some time now to achieve homeostasis.  40mg down to 2.25  since May 2018 is a pretty fast taper of Zeldox. (for someone who has been on and off a lot of psych drugs)   Seems like achieving stability right now would set you up for the most success in the long run. Then worry about tapering diazepam. 

 

It's all so complicated when poly-drugged and we are all so different.  I really hope you start to feel more stable soon.

 

Grace

[Lukielass]

Thank you so much for your response Grace. I’ve read some of your battles too recently and really feel for you. 

 

I have kept kept up the .75mg diazepam for two nights and this morning I felt worse and was so dizzy I was afraid I would fall and hurt myself. I live alone. I couldn’t think thru the brain fog and was non functional. So I decided to double my dose and took another .75mg at 0700. I felt much more functional within an hour and so I will continue my 1.5mg dose over the next few days and see how I go. As Shep said earlier, I should find a dose I’m comfortable with, but not more than 5mg a night. I will try decreasing from 1.5 if I keep feeling better over the next few days. 

 

So yes I’m going to focus on stabilising for a while and not make more Zeldox cuts for a while after I find a stabilising diazepam dose. Once I’m off Zeldox I’ll stabilise and then tackle the diazepam.

 

Getting off Benzos is far harder than I expected and I was told 18 years ago when I started diazepam that if I only use diazepam a few times a week I wouldn’t get dependent. I believed that till I quit cold turkey and had the severe withdrawals a few days ago. And yes, my dosage has been all over the place for 18 years. But most of the time I only took about 10 mg a week. I have taken up to 10mg a day to get me thru rough patches for up to 3 weeks at a time. I always dropped down to about 10 mg a week with no withdrawals in the past. 

 

Although I’m pretty much housebound at the moment, I’m still managing to keep up my routine of eating well, exercise, supplements and relaxation to take care of myself. 

 

Thank you all for your support. This is such an excellent website for those in crisis. 

[WiggleIt]

16 minutes ago, Lukielass said:

Getting off Benzos is far harder than I expected and I was told 18 years ago when I started diazepam that if I only use diazepam a few times a week I wouldn’t get dependent.

Hi Lukielass,

Boy oh boy, did this sentence resonate with me!  My doctors told me the same thing about benzos, and they also told me to go ahead and quit cold turkey because I was only using it a few times a week, so, therefore, they said I wouldn't have any problems.  YEESH, was that wrong.  But I'm through the worst of it and very happy these days!

You've definitely found a great place here for support, and you can benefit from the wisdom on SA and and from a safe plan now moving forward.  

[Shep]

On 3/1/2019 at 9:06 PM, Lukielass said:

Question: Because I’ve used diazepam periodically, can you point me in the right direction for how to taper a drug that’s been used periodically? How hard is it to get off exactly? Been trying to search the forum without much luck. 

 

The first goal is to find a daily dose that makes you comfortable and take it at the same time every day. So you will no longer be taking it periodically. 

 

The next goal is to hold and stabilize as much as possible. Then decide if you wish to continue tapering off the Zeldox. If so, then you'll keep taking the benzo until you are off Zeldox and have stabilized from that taper. 

 

How are you feeling? What dose of diazepam are you on now? 

 

[Lukielass]

Hi Shep,

 

thanks so so much for checking in and your explanation. I’m on 1.5mg diazepam now. Just started that dose yesterday. I doubled it from .75 which was doing nothing. I feel better so I’ll give it a few days on that dose and see if I can lower it. I’m starting to feel side effects from diazepam again like dry mouth and bruxism. Once I’m stabilised I may decide to hold the Zeldox and taper the diazepam. I hate the way diazepam makes me feel when taken regularly. But again as you said, one step at a time. Thank you again. 

[savinggrace]

Sounds like you have a good plan Lukielass. Find a stabilizing diazepam dose and stay with it. You may have to put up with some side effects but if your over-all stability is better, and you are able to not be bedridden then that may be your “normal.”

 

imagine taking benzos every single day for 16 years like I have and periodically before that! You have done some tough tapering and still live to tell about it. You can do this. You may also feel side effects that are just temporary with the diazepam. I would not be too quick to down-dose or updose until you give your brain some time to adjust. 1.5/day hopefully will be enough but your GABA receptors are in charge so forget what the doctors have said and listen to your gut and your brain. 

 

Glad to hear the updose helped. 

Grace 

[Lukielass]

Thank you for your encouragement savinggrace and wigglelt. It means a lot. 

 

Its noon here and I have been awake since 2 am. 

 

Besides the insomnia last last night I feel really good with the 1.5mg dose I started yesterday. Brain fog has mostly lifted and I had enough energy to actually leave the house (it’s been a week) although I didn’t drive. Still a little dizzy but major improvement. 

 

I will take 1.5mg again tonight and make a decision whether or not to down my dose tomorrow night. If I do, it will probably be to 1 mg and see how I go over several days. .75 didn’t cut it at first and I want to try 1mg now that some of it is built up in my system. 

 

Btw I hate how diazepam makes me feel. Heavy and anxious, dry and depleted. And I get terrible sleep with it. Either I sleep like a log and don’t move for 10 hours (and wake up with a sore neck), or I wake up in the wee morning hours. Only time will tell, but I may shift my dose from nighttime to am since I used to get better sleep when taking it in the day. I know I’m getting ahead of myself, but any comments on this approach would be appreciated. 

 

Im kinda excited cause this diazepam dependence may be causing my recent horrible anxiety, ibs and food sensitivities. And imagine what I’ve been doing to my body for the last 18 years by only using it occasionally!  I’m surprised it has coped all these years. I may be able to eventually get control of these things after I get off diazepam. Again tho one step at a time. 

 

Most grateful for all the responses. 

[Lukielass]

@Shep

 

Hi Shep,

 

Here’s a summary of what’s happened the last few days:

 

 

5 mar 19 feel a little better today. Still some wd. Still getting waves of sleepiness. Considering decreasing to 1 mg. 

 

4 mar 19 felt somewhat functional today. Still some wd. Waves of sleepiness. Usually happens when I have too much diazepam.

Held 1.5mg 1600 

 

3 mar 19 still having quite bad wd. Upped diazepam 1.5mg 1600. Felt better immediately. 

 

2 mar 19 quite bad wd. Held .75 1600

 

1 mar 19 severe withdrawals. .75mg diazepam 1600

 

20 feb 19 Last 5mg diazepam before stopping cold turkey

 

 

Do you think I should try to decrease to 1 mg tonight? I’m still getting tolerable wd but I’m also getting waves of sleepiness which I used to get when I took too much in the past. That makes me think I should decrease and hold at 1mg for at least 9 days (if no wd) to see if I should up or down it at that time. 

 

Your thoughts? Thanks so much!

I’m just so glad I’m somewhat functional atm. So thanks for your help in getting me there! ☺️

[Shep]

10 hours ago, Lukielass said:

Do you think I should try to decrease to 1 mg tonight? I’m still getting tolerable wd but I’m also getting waves of sleepiness which I used to get when I took too much in the past. That makes me think I should decrease and hold at 1mg for at least 9 days (if no wd) to see if I should up or down it at that time. 

 

I'm glad you're doing better, Lukie. Well done on the reinstatement. 

 

Are you taking the diazepam during the day or only at night? 

 

Please post when you are taking each of your drugs. If you do decide to decrease, I would only go down to 1.25 mg for a couple of days and see how you do. It's possible there's a sweet spot in between 1.5 mg and .75 mg.

 

Valium can be a bit tricky because it's long half life can take a week or so before you really know how a change is affecting you. 

 

Please keep posting daily so we can track your progress. 

[Lukielass]

@Shep

 

Hi Shep and thank you for your encouragement and attention. 

 

Here is my current dosages and times:

 

0500 2.25mg Zeldox

1600 2.25mg Zeldox

1600 1.5mg Diazepam

 

I may hold off decreasing to 1.25 for a few days because I was hit pretty badly with wd after I posted yesterday. I feel more stable today but it’s still early in the day here. 

 

Yes youre right the long half life of diazepam makes things tricky. 

 

Thank you again. 

[Shep]

15 hours ago, Lukielass said:

I may hold off decreasing to 1.25 for a few days because I was hit pretty badly with wd after I posted yesterday. I feel more stable today but it’s still early in the day here. 

 

This sounds like a wise plan. Please let us know how you're doing over the coming days. 

[Lukielass]

@Shep

 

Hi Shep,

 

Here’s an update on my progress the last few days. I’m still taking 1.5mg diazepam every night at 1600. 

 

Wed 6 mar good sleep but had nightmares. (Typical for me when taking diazepam). Felt quite good as compared to much of the last 18 years. Very little dizziness, no brain fog, fatigue much better. Anxiety much better. Only a bit of situational anxiety. No gut issues at all. First time in years. Tmj still bad. 

 

Thur 7 mar Good sleep but had nightmares. Very little anxiety. No palpitations, no brain fog. Quite energetic in am. Energy surprisingly turned into anger for 5 hours in pm. Anger is very unusual for me. Decided not to lower dose. No gut issues at all. Tmj still bad. 

 

Fri 8 mar Pretty good sleep. No nightmares. A little depressed and anxious. Tmj a little better. A little angry on and off. Plenty of energy. No dizziness or brain fog. Feeling quite good. Almost happy, looking forward to the future. A little gut problems. 

 

 

Im thinking most of my ibs issues the last several years may have come from interdose withdrawals since I usually only took diazepam a few times a week. Now that I’m taking a lower dose *every* night, my ibs has seemed to settle right down and I’ve even been able to add back some foods I was previously sensitive to. 

 

Ive been taking 1.5 mg for 5 days now. If I’m stable tomorrow with manageable anger, I’ll try lowering to 1.25 mg and holding that for maybe 3 weeks to see if I get withdrawals. 

 

Hope things are going well for you. Thanks for for all your help!

 

 

 

 

[Shep]

6 hours ago, Lukielass said:

Im thinking most of my ibs issues the last several years may have come from interdose withdrawals since I usually only took diazepam a few times a week. Now that I’m taking a lower dose *every* night, my ibs has seemed to settle right down and I’ve even been able to add back some foods I was previously sensitive to. 

 

Yes, you're right that the diazepam could be the problem that caused your IBS. Psych drugs can really harm the gut. And periodic dosing likely confused your system. 

 

It really looks like you're stabilizing, Lukie. I'm very glad to read your latest update. 

 

Do you wear a nightguard for your TMJ? Please see this thread, as it might provide more helpful advice:

 

Face, jaw, tongue muscle tension and pain, bruxism, teeth clenching, tics, TMJ

 

6 hours ago, Lukielass said:

Ive been taking 1.5 mg for 5 days now. If I’m stable tomorrow with manageable anger, I’ll try lowering to 1.25 mg and holding that for maybe 3 weeks to see if I get withdrawals. 

 

This sounds like a good plan. But if you start to feel worse on the lower dose, you may want to increase it again to 1.5 MG and go into a long hold. You are seeing improvements, so the goal is to build a very solid foundation before you begin tapering again. 

 

Please keep us updated. 

[Lukielass]

@Shep

 

Hi Shep,

 

Thanks again for your response. Yes I wear a night guard every night currently. Just started wearing it again when I went into withdrawals cause I noticed the Tmj out of control again. I already have damaged teeth from bruxism due to Lexapro and I don’t want them to get worse. 

 

When the Tmj gets better I skip wearing the nightguard cause I hate the thing and I believe I ended up with three cavities from it last November. I got it made and started wearing it last August I think. I had only 2 cavities my whole life previously, and they were when I was about 10 years old. I’m 51 now. I’m more careful with the mouthguard recently (hygiene wise) and am using a remineralising tooth powder that I keep on my teeth at night with the mouthguard. Seems to work. 

 

Thanks for the link re Tmj. I tried some tension release exercises contained therein and they seem to work. 

 

I had a bit of a roller coaster day today with diarrhoea (and resulting waves of fatigue) probably caused by adding onions and garlic back into my diet too soon yesterday.  I’ve been on an elimination diet for ibs and I got a little overconfident. Sick of eating the same boring foods all the time. But I just need to be patient. 

 

Anyhow, I’ve been stable and feeling quite good otherwise today so I’ll commence with dropping my dose to 1.25mg tonight and hold for 3 weeks or go back up if I get withdrawals before then. 

 

I’m keen to lower my dose as some diazepam side effects are catching up with me, namely dry eye, dry mouth and waves of sleepiness. They have gotten progressively worse since I’ve been on a daily dose over the last week and a bit. Diazepam never caused those side effects in me before, or at least not as noticeable, even when I was taking 10mg a day for 3 weeks straight. So I’m a little confused over this. 

 

Ill let let you know how I go!

 

Thanks and I’ll be in touch soon. 

[Lukielass]

@Shep

 

Hi Shep,

 

I wanted to give you an update. I was on 1.25 for five days going fine but last night I got what seems like withdrawals. I was dizzy, had brain zaps and headaches. And they got worse over the hours. So I bumped my dose back up to 1.5mg and am feeling a little better today. 

 

Question: I was also hit with a huge amount of stress yesterday. Can the effects of stress manifest as withdrawal symptoms? I want to drop back down to 1.25 if so. 

 

 

 

Heres a a summary of what has happened since diazepam reinstatement FYI so you’re not searching thru my notes. 

 

20 feb 19 stopped 5mg diazepam cold turkey from 2x per week

1 mar 19 reinstated diazepam .75mg each night due to severe withdrawals

3 mar 19 increased to 1.5mg each night. Withdrawals still not under control

9 mar 19 decreased to 1.25 mg as was feeling stabilised and good. 

14 mar 19 increased to 1.5 as was getting withdrawals again. 

 

I have not touched my 2.25 mg Zeldox dose morning and night. And nothing else has changed with diet and exercise routine. 

 

Thanks so much for any suggestions/comments. Much appreciated. 

[Shep]

12 hours ago, Lukielass said:

I wanted to give you an update. I was on 1.25 for five days going fine but last night I got what seems like withdrawals. I was dizzy, had brain zaps and headaches. And they got worse over the hours. So I bumped my dose back up to 1.5mg and am feeling a little better today. 

 

Question: I was also hit with a huge amount of stress yesterday. Can the effects of stress manifest as withdrawal symptoms? I want to drop back down to 1.25 if so.

 

This is where it gets a bit tricky, Lukie. Diazepam has a half-life of up to 200 hours. So at 5 days, you would have been at 120 hours. If you are a fast metabolizer, you may be feeling the effects of the decrease from reducing from 1.5 MG. 

 

Coupled that with a lot of stress and it could have ramped up symptoms. 

 

I fear too much bouncing around in dose is going to destabilize your nervous system. I'm hoping you find a sweet spot soon, but you may be in a position where getting close enough will be your best game plan and then work with non-drug coping skills to make you more comfortable. 

 

On 3/9/2019 at 1:14 AM, Lukielass said:

I’m keen to lower my dose as some diazepam side effects are catching up with me, namely dry eye, dry mouth and waves of sleepiness. They have gotten progressively worse since I’ve been on a daily dose over the last week and a bit. Diazepam never caused those side effects in me before, or at least not as noticeable, even when I was taking 10mg a day for 3 weeks straight. So I’m a little confused over this. 

 

Now that you've gone back up to 1.5 MG, you may be back to where you were when you were last at this dose. 

 

You may want to spend some time thinking about what is more tolerable - feeling some over-sedation and dry eye and mouth, or feeling the brain zaps and headache that you felt yesterday. Again, that could have been stress induced, which muddies the waters. 

 

Some great breathing exercises that can help with stress:

 

4-7-8 Breathing: Health Benefits & Demonstration

 

Breathing for Mood and Well Being (Yoga and other Techniques)

 

And for headaches:

 

Yoga For Neck Pain, Neck Tension, Headaches & Shoulder Pain Relief video (8 minute)

 

If these aren't something you find helpful, you may find other things here:

 

Non-drug techniques to cope with emotional symptoms

 

Non-drug techniques for dealing with body pain

 

I would suggest not making any more changes. Pick a dose of 1.25 MG or 1.5 MG or somewhere in between and then give it several weeks to sort out. It takes about 4 days for your nervous system to register a change and then it can take a week or longer to adjust.  It's possible the brain zaps and headache may have past if you'd given yourself a bit more time at the 1.25 MG dose and worked on some breathing exercises, taken an epsom salt bath, or tried other non-drug ways of coping while removing  as much stress as possible (easier said than done, I know). 

 

Please post your thoughts on this because I am concerned about too many changes. 

[Lukielass]

@Shep

 

Hi Shep,

 

thanks so so much for your concern. 

 

Just an update, I’m sticking to the 1.5 mg I started last week. I’ve been feeling really good generally speaking. Even a little optimistic which is really good for me. 

 

On 3/15/2019 at 10:15 PM, Shep said:

You may want to spend some time thinking about what is more tolerable - feeling some over-sedation and dry eye and mouth, or feeling the brain zaps and headache that you felt yesterday. Again, that could have been stress induced, which muddies the waters. 

 

Yes I can tolerate the over sedation and dry eye and mouth much more than the brain zaps and headache I started getting. I couldn’t cope when they started happening, that’s why I had to make a quick decision re upping my dose cause I became non functional and unable to drive or concentrate. I got so unwell so quickly and I had family relying heavily on me the next day so I had to stop the withdrawal in it’s tracks. And that’s what happened. I felt much better the next morning. 

 

My body is so sensitive it tells me in no uncertain terms when something is not right. 

 

On 3/15/2019 at 10:15 PM, Shep said:

 

I fear too much bouncing around in dose is going to destabilize your nervous system. I'm hoping you find a sweet spot soon, but you may be in a position where getting close enough will be your best game plan and then work with non-drug coping skills to make you more comfortable. 

 

Yes I agree. I’m going to stick with the 1.5 for a while and then taper down slowly. I was thinking about starting to taper in maybe 4 weeks or so. Is that too soon in your experience? See, I want to start my taper soon cause I have low blood pressure and my Opthalmologist said I have significant blindness in my right eye that may be due to diazepam bottoming out my blood pressure at night.

 

Mind you 1.5 is a lot less than the 10 mg I used to take for 3 weeks at a time. And I also took endone/hydromorphone at the same time during a really bad spell in hospital a few years ago when I had my appendix out and nearly died from septicaemia. We are not exactly sure when this blindness happened and I haven’t had my 6 month appointment yet to see if it’s gotten any worse. I just get scared when I feel sleepy with diazepam and I just want to start tapering ASAP.  I need my eyesight! ☺️

 

Anyway thanks again for your concern and all your help and I’ll keep you updated. 

[Shep]

7 hours ago, Lukielass said:

Just an update, I’m sticking to the 1.5 mg I started last week. I’ve been feeling really good generally speaking. Even a little optimistic which is really good for me. 

 

 

This is excellent news, Lukie. I'm so glad you are feeling better.

 

7 hours ago, Lukielass said:

Yes I agree. I’m going to stick with the 1.5 for a while and then taper down slowly. I was thinking about starting to taper in maybe 4 weeks or so. Is that too soon in your experience? See, I want to start my taper soon cause I have low blood pressure and my Opthalmologist said I have significant blindness in my right eye that may be due to diazepam bottoming out my blood pressure at night.

 

Have you gotten a second opinion on this? Is your doctor concerned about your antipsychotic history causing eye problems as well as the diazepam? 

 

I have a lot of vision problems made worse during withdrawal, but when I asked my ophthalmologist about the early onset cataract in my left eye possibly coming from being on Stelazine for so long, he said that if it had been caused by a drug, I would have cataracts in both eyes, not just one. 

 

How low is your blood pressure getting at night? Since low blood pressure can be a risk factor for glaucoma, please let us know more about this. And definitely keep following up with your eye doctor. 

[Lukielass]

8 hours ago, Shep said:

 

Have you gotten a second opinion on this? Is your doctor concerned about your antipsychotic history causing eye problems as well as the diazepam? 

 

Hi @Shep

 

Actually come to think of it, none of my docs are really concerned about any of my meds causing these eye problems cause I’ve always been on such a low dose of everything. The Opthalmologist did say that anything that causes the blood pressure to bottom out can cause nerve damage and blindness. So maybe it’s just my thinking that the diazepam may have caused it. He didn’t seem concerned about my current meds tho. He was more concerned about the appendicitis episode when I was loaded up with painkillers and my blood pressure was very low, exacerbated by septic shock. 

 

Ill check my blood pressure at night and let you know how low it gets. 

 

Thanks again. 

[Lukielass]

On 3/19/2019 at 9:04 PM, Shep said:

How low is your blood pressure getting at night? Since low blood pressure can be a risk factor for glaucoma, please let us know more about this.

@Shep

 

Hi Shep,

 

OK, I've taken my blood pressure at several times for several nights now, and the lowest it goes is 91/63 after coming out of a deep sleep in the middle of the night. Since anything under 90/60 *during the day* is considered low blood pressure, these nighttime readings seem to be ok.

 

My daytime readings are around 110/70 atm.

 

I've been taking 1.5mg diazepam each night since 14 March. I will start tapering after 4 weeks on 11 April and try a 10% reduction, which brings it down to 1.35 and see how we go. Unless you have any other suggestions?

 

Since the last time I wrote, I've been doing remarkably well. Taking the diazepam every night makes me yawn my head off most days and gives me nightmares at night. But besides that, my moods are quite good, the brain fog has lifted, my sleep is good, the anxiety and ocd are not such a big thing to me anymore, I've had plenty of energy, no brain zaps, and my Tmj and tinnitus are a bit better. So it seems I'm quite stable atm. I am so appreciative of this site and all the help I have received!

 

I'm using this opportunity to sort out my diet and IBS. I've been on a strict elimination diet since mid February and have cut out grains, legumes, dairy, eggs, peanuts, soy, high fodmaps and any additives incl processed meats. Doesn't leave me with much to eat, but I focus on good fats, proteins, fruits with digestive enzymes, fermented foods, bone broth and cruciferous veggies. And lots of spices to make things more interesting! And I've even been able to add back some foods without problems

 

My gut has a loooong way to go, but I do see big improvements already. And I regained my positive connection to food again and actually enjoy my meals like I used to. Before I hated eating because of the nausea, pain and diarrhoea. And I was wasting away to nothing. Now I'm putting on a little weight which can't be a bad thing.

 

Thanks again for all your help and please let me know if you have any thoughts or suggestions regarding my blood pressure at night and the proposed taper on the 11 April.

 

 

 

 

 

 

[Shep]

I'm glad your blood pressure is okay, Lukie.

 

Thanks for reporting on that.

 

11 hours ago, Lukielass said:

I've been taking 1.5mg diazepam each night since 14 March. I will start tapering after 4 weeks on 11 April and try a 10% reduction, which brings it down to 1.35 and see how we go. Unless you have any other suggestions?

 

I'm a bit confused because of the back and forth discussions regarding which drug to taper first. 

 

On 3/2/2019 at 8:27 PM, Lukielass said:

Once I’m off Zeldox I’ll stabilise and then tackle the diazepam.

 

On 3/3/2019 at 12:51 PM, Lukielass said:

Once I’m stabilised I may decide to hold the Zeldox and taper the diazepam.

 

Questions that may help with this decision - which drug is helping the most with sleep, the Zeldox or the diazepam? Will you be able to sleep without the diazepam? 

 

If so, than tapering the diazepam sounds like a good plan. 

 

I would start out with a 5% reduction and see how you do. The reason being, you have reached an amazing amount of stability and I'm so glad to read this. My fear is that you'll rush this and go into a too fast taper and lose this great foundation. 

 

Please let me know your thoughts, as well as answers to my questions in bold. 

[Lukielass]

Hi Shep,

@Shep

 

A quick update,

 

I’m still quite stable atm and am feeling generally very good. Now to answer your question about which to taper first:

 

On 3/26/2019 at 10:06 PM, Shep said:

Questions that may help with this decision - which drug is helping the most with sleep, the Zeldox or the diazepam? Will you be able to sleep without the diazepam?

 

Ok I have taken some time to carefully consider what you are saying about which to taper first and I decided to start to taper the diazepam. Reason being, I have had a terrible time with Tmj since starting to take the diazepam 1.5mg consistently every night. This is despite regular massaging to the area which was recommended by a physiotherapist. Diazepam has always made me clench and gnash at night and it’s really bothering me and wrecking my teeth despite the mouthguard. 

 

I am hoping a slow taper of the diazepam will bring the Tmj under control, and then I may switch to completely tapering off the Zeldox. That’s because the diazepam *does* help me sleep and I’ll probably need that to get off the Zeldox completely. 

 

On 3/26/2019 at 10:06 PM, Shep said:

I would start out with a 5% reduction and see how you do. The reason being, you have reached an amazing amount of stability and I'm so glad to read this. My fear is that you'll rush this and go into a too fast taper and lose this great foundation. 

 

Thank you. I agree. I’m very impatient if you haven’t guessed! I’ll go down to 1.42mg next Thursday the 11 April and hold for 4 weeks and see how I go. That’s technically a 5.3% decrease but it just makes it easier to measure. 

 

Thank you again for your consistent help and I’ll keep you updated. Here we go...  ☺️

[Shep]

18 hours ago, Lukielass said:

I am hoping a slow taper of the diazepam will bring the Tmj under control, and then I may switch to completely tapering off the Zeldox. That’s because the diazepam *does* help me sleep and I’ll probably need that to get off the Zeldox completely. 

 

This sounds like a wise plan. 

 

As you taper the diazepam, once you notice any problems with sleep, please stop tapering. Like you mention, you'll benefit from it to get off the Zeldox. 

 

 

[Lukielass]

@Shep

 

Hi Shep. 

 

Yes, thank you I will keep that in mind. I’ll keep you posted on my progress. 

 

Thanks again. 

[Lukielass]

@Shep

 

Hi Shep, 

 

It’s edging on 4 weeks since I dropped my dose to 1.42 on 18 April. I’ve been doing ok but have noticed after 3 weeks after dropping my dose I started developing some pretty bad arthritis which I don’t normally have. It’s gotten progressively worse over the last few days and now I have a gut ache and some digestive issues again that I haven’t had since February when I eliminated all the foods I’m sensitive to. 

 

I thought maybe i was getting the flu as it’s flu season here but it doesn’t feel quite like the flu. I’m also a bit shaky and anxious more than normal. Thursday this week I was planning on decreasing my dose again as that will be 4 weeks. Personally I think I should hold till these symptoms go away and then drop another 5% to see if the same thing happens again 3 weeks after the next time I decrease. Then I’ll know for sure it’s withdrawals and not my gut issues playing up. 

 

Your thoughts? I’m depressed cause I was doing so well till now. Any suggestions would be appreciated. 

 

Thanks so much. 

[Shep]

There are symptoms that mimic the flu. This thread may help:

 

Flu-like withdrawal symptoms or real virus flu, how to tell?

 

I know you're currently on diazepam and zeldox and not an AD, but all psych drugs can cause this. 

 

13 hours ago, Lukielass said:

Personally I think I should hold till these symptoms go away and then drop another 5% to see if the same thing happens again 3 weeks after the next time I decrease. Then I’ll know for sure it’s withdrawals and not my gut issues playing up. 

 

This sounds like a good plan. Please let us know how you're doing before you make any more reductions. 

 

[Lukielass]

@Shep

 

Hi Shep, 

 

Ok so my last reduction for diazepam was on 18 April. To recap, I had withdrawals 3 weeks later and those lasted about 10 days. They got increasingly better the last few days and so I’m gearing up to dropping another 5% to 1.35mg. I think I should wait a day or two to make sure my feeling better isn’t a fluke. 

 

My anxiety is at baseline (normal for me atm), the gut issues have settled down pretty much, and I’m still left with a little arthritis in my shoulders which isn’t all that unusual for me. It has settled down from affecting most joints in my body. I feel more positive now and can talk my way thru my anxiety. My Tmj has settled down too which was quite bad during withdrawals. I have been sleeping fairly well lately even despite my withdrawals. 

 

Please let me know if you have any suggestions about the proposed reduction in a few days. I’m kinda keen to push myself a little with lowering the diazepam cause I hate the nightmares and daytime sedation it causes.  I also think it drops my blood pressure at night which can’t be good for my normal tension glaucoma. My bp readings during the night are up since I last reported, averaging around 105/70. I think that’s from the elimination diet I’m on. Seems like my overall circulation is better too which is good. 

 

Thanks so so much Shep!

 

 

 

[Shep]

19 hours ago, Lukielass said:

Ok so my last reduction for diazepam was on 18 April. To recap, I had withdrawals 3 weeks later and those lasted about 10 days. They got increasingly better the last few days and so I’m gearing up to dropping another 5% to 1.35mg. I think I should wait a day or two to make sure my feeling better isn’t a fluke. 

 

Your update is very positive, Lukie. Please let us know how you're doing over the next couple of days and if you're still going strong, a 5% reduction sounds good. 

[Lukielass]

@Shep

 

Hi Shep, 

 

Ive been feeling quite stable and calm over the last few days and arthritis in shoulders is bearable so I’ll proceed to drop my diazepam dose another 5% to 1.35 tonight. 

 

I’ll keep you informed on how I’m going. 

 

Thanks again for your help and attention. 

[Shep]

Please let us know how you do over the coming days. 

[Lukielass]

@Shep

 

Hi Shep, 

 

Ok so it’s been 6 days since I dropped down to 1.35 diazepam. I’m going quite good so far but still have terrible arthritis which is pretty constant thru the day and night. It’s affecting my whole body and on my better days it just affects my left shoulder. This has been going on for 2 1/2 weeks now. 

 

I broke down a few days ago and took 500 mg acetaminophen once which helped *a lot*. But the next day I had nausea so I haven’t taken it since. My gut is very sensitive to all meds these days. 

 

Ive found in the past that if my arthritis is psych med withdrawals, acetaminophen and even oxycodone won’t relieve the pain at all. So I’m hopeful that means something else is just going on with my body and it’s not wd related. Just makes me very miserable and unable to do much atm. 

 

But the the good news is my sleep is still excellent at night and my moods are pretty good despite the pain. 

 

Also I got a good report from the Opthalmologist Friday. Turns out I don’t have glaucoma and my nerve tissue has even gotten thicker in both retinas (very unusual) and they detected no visual field loss. I can still see lots of blind spots with the Amsler grid at home tho. He said the dying off of the nerve tissue in my right eye was due to loss of blood flow for some reason possibly related to complicated appendicitis with septic shock in 2016. So the fact it’s not another chronic degenerative condition to add to my list is a weight off my shoulders!

 

Regarding non drug ways to deal with arthritis pain, can you point me in the right direction for suggestions?

 

I’m using lots of ginger, turmeric and magnesium oil. I also rub peppermint oil on the affected areas and that seems to help. Hot baths with epsom salt seem to make it worse for some reason. 

 

Thanks again Shep! ☺️