Michael123: Need help regarding unfortunate reinstatement of benzo and pregabalin usage. Stuck in dead end.

[Michael123]

Hello I am seeking an advice for benzo and pregabalin problem. Doctors are sadly useless.

 

My mom was prescribed Clonazepam for problems with sleeping and stress when she was 30. She ended up taking it for 12 years, then she switched to Estazolam right away and stayed on it for another 12 years. She did 1 year taper that was rather succesful.

 

She used it once in few months for stress but everything was ok. Recently, in march, 4-5 years after quitting benzos, she was in kind of panic and anxiety and ended up taking Estazolam for 2 weeks. Got dependent again and the drug stopped working after those 2 weeks and she went into panic mode since bad withdrawals started.

 

Went to doctor, she decided to ditch Estazolam and prescribe Diazepam in 5 mg doses and Pregabalin in 25 mg. So my mom started a kind of panicky taper, she didnt take it for 1 day, then she took, then she skipped two days, then she took, then skipped 3 days, then 4, then 5 and stopped it. Simultanously she was taking the diazepam 2 x day 5mg and pregabalin 3 x day 25 mg. After few weeks she started reducing diazepam dose by half and week ago she stopped it completely after 6 weeks of use.

 

Diazepam also didn't work that well, the withdrawals were bad. She is still taking pregabalin but it doesn't really help much. And the problem is that when she updosed it, she got very bad symptoms, probably doesn't tolerate that drug very well. The withdrawal from benzos are harsh. Shaking for few hours in the morning, lack of sleep or very little of it, panic, stomach pains (they diminished fortunately perhaps due to pregabalin or just by themself), anxiety, vision problems and more.

 

And she is panicking since we don't know where to go now. She is stuck between withdrawals, benzos that doesn't work anymore and pregabalin that has nasty side effects while positive effects are weak due to low dose but she can't updose since the vision problems and other symptoms get too nasty. I assume we can call this situation a reinstatement of benzo if I see it correct, which is unfortunately not recommended from what I read.

 

So what to do now?

1 – try getting back on diazepam 5mg or more? Estazolam? But it doesn't really work anymore

2 – updose pregabalin? But the symptoms are too horrific from it, potentially her body really dislikes the drug, vision problems are the worst

3 – find other benzo and take it for some months and then start super slow taper?

4 – quit pregabalin or stay on 3 x 25 mg?

 

But if she quits then more withdrawal will come and more shaking and panic since pregabalin is anti shaking. Im afraid it can be too harsh on the body. So that's it I guess. Any advice will be greatly appreciated since it looks like a dead end and doctors are too reckless, careless and ignorant sadly.

Edited June 18, 2023 by manymoretodays
name to topic title, spacing for ease of readability

[Onmyway]

Pls fill in the drug signature so we can help you better.  Instructions would be in the email you received when you registered.

[Michael123]

Hello, I did fill my signature some time ago. Bump, in case you missed it. Thanks in advance and thanks for polishing my post.

[Onmyway]

Hi Michael, welcome again. I do not have any capacity right now but have asked other mods to look into your case. We are all volunteers and have way too many people needing our help so it may take a bit. 

[Michael123]

Hello everybody,

we had consultation recently and decided we are not going back on any benzos.

The problem is however that this pregabalin is creating bad symptoms; the worst are mental - my mom can't concentrate, has a lot of bad thoughts, agitation, restlessness. Can't read, watch tv or listen to music, she is stuck
Yesterday she skipped the midday dose and she felt way better till evening dose. However from what I know the taper of this drug should be really slow. But it creates very bad side effects. Maybe the fact that she felt better when skipping dose means that she is not that addicted to it or something? Did anyone have experience when they felt way better when they stopped the dose? Did they get relief and then hell broke loose? Maybe we should keep on skipping or its too dangerous? She say she is very tired of it and seems like there is no way out, she blames the pregabalin for those thoughts.
So should we stay on 3 x 25 ? Or skip some doses?
Any feedback will be appreciated. Thanks.

[Michael123]

Hello,
my mom is taking pregabalin for 2 months as and "aid" for reinstated benzos after 4 years being clean. The problem is this drug makes her really depressive, confused, apathetic and more. The point is she yesterday skipped her midday dose (3 x 25 mg), she felt better within two hours and she felt (relatively) good till her nightly dose. She felt at ease for the first time in 3 months. And I found info on some blog:
"test out if you will experience withdrawal when you want to get off the stuff. On one of your doses, take one capsule less than you usually do. You’ll know in about 5-6 hours how bad the withdrawal is for you. Some people have no problems with decreasing the dose while others, like myself, experience significant withdrawal..."
So the point is Im constantly thinking wether maybe she is the one that can tolerate this drugs w/d (sounds too wonderful tho since she is generally sensitive to all kind of meds) without greater consequences? Thinking if maybe we can just skip midday dose and see what happens in the long run, but I dont want to mess the stability obviously. So Id be glad for some feedback; when did you notice first symptoms of w/d after you stopped your dose of pregabalin? Thanks for any insight.

Edited June 24, 2023 by manymoretodays
name to topic title

[Altostrata]

Hello, @Michael123

 

When did you mother last take diazepam?

 

When was the last time she increased pregabalin?

[Michael123]

Hello.

I have to make some changes since I realized few things yesterday:

1) My mom has akathasia symptoms. All this restlessness, tightness in chest, problems breathing and more - this is definitely it. It's in the morning for 1-3 hours daily. Today she had also one more outburst for 20 minutes in the midday.
2) Actually the bad side effects from pregabalin have substantially decreased. Vision is way better and no more "noises and confusions slamming thru her head". On the other hand pregabalins "therapeutic" effects obviously stopped working already since she did not increase any dose, she keeps it steady 3 x 25 mg for last 2 months. (she started taking 1 pill for 5 days, then introduced another dose and after a week 3rd dose, so we can say last time she added dose was 6 weeks ago. She skipped the midday dose like 3 days ago, then she felt relief from bad side effects, but next days she reinstated the skipped dose and bad side effects seem not to come back)

She is off diazepam for 11 days.

I think its best we keep taking pregabalin like that.

But this akathasia is the worst issue. She said she can take it for like week or two but from what I read this can stay for months or even years. Can't imagine going thru that. Im entertaining a possibility of going back on benzo and either living on it or getting stable with it and starting super super slow taper. But Im worried that kindling will go bad and it won't fix akathasia. Is there a possibility that reinstating stable dose (higher than she was on ever, because estazolam stopped really working when she took it for those 2 weeks) won't fix akathasia?

[Altostrata]

Those might be diazepam withdrawal symptoms.

[Onmyway]

Hi @Michael123, 

I merged your new intro topic here - pls keep all information about your mom's care on this thread so we can easily follow what is happening. Each member gets only one intro thread. 

At this point, what is your intention with regard to these drugs? Do you want to stay on them and optimize how you feel or do you want to stop them? We can help with stopping but we don't provide support with drug cocktails. 

 

Is your mom ok on the pregabalin now? How are her symptoms? 

 

In general keeping the dose of the drug steady is quite important as variations cause kindling and hypersensitivity and make subsequent withdrawal hard, skipping days is also very bad. 

 

[Michael123]

Hello, thank you.

My mom was feeling relatively better for last 3 days, despite morning akathisia for around 1 hour and general restlessness and some shaking. Yesterday she started feeling weak and tired.  Today she is staying in bed in really weak condition, didnt have akathisia today. But she has problems with speaking and breathing. Tightness in chest and throat. She can only whisper now. Also some stomach pain is back and hands are shaking a bit, this annoys her mostly today.

 

She is 2 weeks of diazepam, more than 2 months of estazolam. And keeping steady 3 x 25 mg pregabalin. The side effects of it have kinda subsided, as well as therapeutic effects of this drug. I know people updose it and get relief but my mom couldn't updose due to those side effects, now we're thinking of maybe updosing and seeing how she feels. We're considering it if akathisia comes back tomorrow or any time.

Is there logic to akathisia? Can it start getting progressively worse over months or the begining stages are the worst?

Edited June 27, 2023 by Michael123

[Michael123]

Btw is pregabalin an "anti psychotic" or AD? It is written it is an "anti conculsant", is it the same as anti psychotic?

[Michael123]

Hmmm Im thinking a lot where did akathisia come from - from rapid taper of estazolam/diazepam or because of introduction of pregabalin. I guess there is no way to tell what is the culprit, right?

If its due to pregabalin, then the more my mom takes it, the more severe it will get I guess and that would suck. If its from taper of those 2 drugs then pregabalin could be actually helping mask it.

 

Guess the only way to know is to drop pregabalin but its dangerous to do so, if w/d gets too intense then we would have to go back to it. Would it be advisable to drop it for like 3 days and see if aka wears off? In case it doesnt, would reinstating previous doses of pregabalin make things way worse? I guess it would. Maybe someone had some experience with it. Thanks for any feedback...

 

EDIT: We're figuring it started right after diazepam jump so its probably w/d, not due to introduction of pregabalin. And I reread Onmyway last post and yeah, we're gonna keep it stable, no messing with dose skipping now. Btw why can I edit only some posts? I wanted to merge those 3 posts into one but can't. Hope its ok like that. Peace.

[Shep]

19 hours ago, Michael123 said:

EDIT: We're figuring it started right after diazepam jump so its probably w/d, not due to introduction of pregabalin. And I reread Onmyway last post and yeah, we're gonna keep it stable, no messing with dose skipping now. Btw why can I edit only some posts? I wanted to merge those 3 posts into one but can't. Hope its ok like that. Peace.

 

Please note you're only able to edit for a short time after posting (I believe it's an hour). It's okay to make a new post if you need to let us know more information, clarify existing information, or let us know if you made a mistake when you posted. Having 3 posts is fine. It's actually better to keep your posts short for readability sake. 

 

On 6/27/2023 at 6:43 AM, Michael123 said:

But she has problems with speaking and breathing. Tightness in chest and throat. She can only whisper now.

 

Has she been checked out by a doctor? Has she taken a Covid test? 

 

Is your mother dealing with other health conditions? If so, please list them. 

 

On 6/27/2023 at 8:48 AM, Michael123 said:

Btw is pregabalin an "anti psychotic" or AD? It is written it is an "anti conculsant", is it the same as anti psychotic?

 

It's not an anti-psychotic or an AD. Please see the below link for the information we have on the site and you can google to find more information about how this drug works. 

 

Tips for tapering off pregabalin (Lyrica)

 

Please list the drugs your mother is taking (psychiatric as well as drugs for other conditions), the time(s) of day she takes them, and the doses. Also list any supplements, along with the time(s) of day and the doses. 

[Altostrata]

Doctors are prescribing pregabalin as a substitute for benzos to treat benzo withdrawal syndrome. Often, it is not a good substitute for benzos.

 

Please look up adverse effects of pregabalin on drugs.com. The FDA has warned about breathing problems https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-serious-breathing-problems-seizure-and-nerve-pain-medicines-gabapentin-neurontin

 

If symptoms get worse shortly after each dose, they are likely to be adverse effects of the drug.

 

She may also be allergic to pregabalin.

[Michael123]

Thank you for feedback.

 

1) Starting with pregabalin issue - I don't think it is the causal agent; mom is taking it for over 2 months and the tightness in chest intensified recently, like 14 days off diazepam. I've got another feedback from someone taking pregabalin and she stated that she had and urge right after skipping dose and horrific anxiety kicked in. That was not the case for my mom so we're still contemplating on skipping the midday dose but we're gonna keep it stable for now untill maybe we get some feedback here. The negative side effects of pregabalin has mostly subsized and they are not that bothersome anymore.

 

2) Do you think the diazepam is out of the body already after 16 days? She used it for around 7 weeks. I assume that tightness in chest and guts and internal and some external tremors are from stopping diazepam.

 

3) My mom has hypothyroidism for long time, she is taking Levothyroxinum natricum for it every morning for last 30 years

Last year she developed Sjogren's syndrome (also autoimmune). But we have a good protocol for those (lots of green smoothies from dark leafy greens + fruits. She is like 50% raw vegan now, and other food is vegan. Check out dr Brooke Goldner if in need. She fixed her autoimmune with high leafy green, mostly raw vegan diet and many others find success with it).

 

4) And now the bad news... she is taking plenty of supplements in not really scheduled manner:
- magnesium 2/3 times a day

- vit B complex 2/3 times a day

- melissa 2/3 times a day

- vit d3 4000 2 x day

- vit E 2 x day

- omega 3 fish oil 2x day

- vit C 1 x day

- chamomile 3 x day

- some herbal tea for sleep, it has hops in it and some other stuff

- valerian root tablets (when she feels really bad. She doesn't take it everyday. Maybe every 2nd or 3rd)

 

5) We're staying as far away from "Fauci juice" and PCR tests as possible. That is not an issue.

 

6) So besides those she is only taking pregabalin 3 x 25 mg. We're tempted to cut the midday dose and see how she feels but abstaining from that for now from obvious reasons (but Im hoping she will be the case in which body will thank for stopping introduction of this crap since she felt good after one test of skipping midday dose. Yes I know there may be longer delay hence why we dont do it).

So should she start removing those supplements in slow manner? Maybe taper some? Cut one supplement every few days? I assume just ditching them at once is a bad idea.

 

7) Mom felt relatively fine for 2-3 days, then 2 days were bad due to tremors and chest tightness and constricted breathing. Today it was better in the morning, she napped for 2 hours very relaxed but the tightness and light tremors are coming back now. Can we call those "small windows"? Since there was an improvment in feeling. Maybe acute is over? Depending wether diazepam is out of the body. The akathisia is still annoying 1-2 hours per day. But it's relatively mild compared to other cases Ive seen on youtube. Hope it does not progress in the future...

 

8 - Im wondering tho, what would be the best strategy for the moment she realized she was on 2 week estazolam binge (in march, after 4 years benzo free) and went into panic mode when the withdrawal/kindling symptoms started. Should she ramp up the estazolam dose, stabilize and then start very slow taper after some months? Answer to this question won't change anything, but Im just curious what would be the best strategy.

Ok that's it. Thank you very much for support in this horror. More feedback appreciated.

 

[Onmyway]

 

@Michael123, pls put the supplements in the signature. 

Some B vitamins and vit D increase agitation in withdrawal. She is on massive (toxic doses of vit D)- 4000 is the max and she is  taking double that. No idea what is in melissa. The herbal stuff can also be having a paradoxical effect on her. 

 

You are asking questions about a special case that no one can answer - it could be any of the things that you are enumerating above including some other chest infection. There is a Covid wave right now in Europe - one of my friends got joint swelling for the last 4 weeks from it. We are not a diagnostic center and to be honest your doctor is only speculating as well (and so are you) - we (humanity) don't have a precise understanding of brain chemistry that can help us disentangle all the questions that you are asking.

 

You have stopped two benzos in the last few months and any of those can be causing withdrawal effects. You could also have startup effects from pregabalin. The only solution we know to help with WD is reinstatement. Unfortunately you are also hypersensitive to it so you are between a rock and a hard place. We don't know how to help WD beyond that. Doctors prescribe pregabalin. We don't know if that works predictably well - you can have a look at the website and see what other people on that regimen have found. 

 

 

[Shep]

20 hours ago, Michael123 said:

Valerian root tablets (when she feels really bad. She doesn't take it everyday. Maybe every 2nd or 3rd)

 

19 hours ago, Onmyway said:

You have stopped two benzos in the last few months and any of those can be causing withdrawal effects

 

@Michael123 Valerian root affects GABA, just like benzos. 

 

Valerian Root

 

Using it periodically may be causing problems. 

 

20 hours ago, Michael123 said:

5) We're staying as far away from "Fauci juice" and PCR tests as possible. That is not an issue.

 

19 hours ago, Onmyway said:

There is a Covid wave right now in Europe

 

Your mother can use an at-home Covid test. It doesn't have to be a PCR test.

 

At this point, your mother's case is likely too much for online peer support. She really needs to work with her doctor. 

[Michael123]

Thank you for feedback.

Well, my mom definitely has no flu like symptoms. I read plenty about tremors and breathing problems/chest tightness/air hunger etc and these all are benzo wd.

 

She is generally stable. Mornings are bad due to depression (possibly due to pregabalin), some light tremors, the breathing stuff and some akathisia but she is taking aka without any panic so it's a calm one. Afternoons vary. Yesterday was the best 3-4 hours, she was almost like normal when stomach and chest tightness gave in.

We're just gonna flow with time and see what future brings, might start tapering pregabalin next week or more into future.

 

She did have few appointments with doctors, but those clowns (sorry, don't wanna offend anyone) are just pill jugglers. One wanted to updose pregabalina, one offered cymbalta and gaslighted her its not wd but depression (like gaba receptors dont exist), other wanted to cold turkey pregabalin and prescribe some AD. There is 99% chance these people will make things worse. We're just gonna slowly reduce supplements and keep it stable.

Thanks for support, I will update if there is any breakthrough.

[Altostrata]

1 hour ago, Michael123 said:

I read plenty about tremors and breathing problems/chest tightness/air hunger etc and these all are benzo wd.

 

Not necessarily.

 

1 hour ago, Michael123 said:

Mornings are bad due to depression (possibly due to pregabalin), some light tremors, the breathing stuff and some akathisia but she is taking aka without any panic so it's a calm one. Afternoons vary. Yesterday was the best 3-4 hours, she was almost like normal when stomach and chest tightness gave in.

 

Better in the afternoon, when the morning pregabalin wears off? That's an adverse reaction to pregabalin.

 

But as we all said, too complex for peer support.

[Michael123]

My mom takes pregabalin 3 x day. So whole 24h are covered by effects of it. We will probably skip the morning dose (since mornings are worst) next week for 1 day to see if she gets any better. If nothing changes, we will probably reinstate that dose next day. If she feels way better we will probably just continue without morning dose for 2-4 weeks to see if any wd kicks in. Please let me know if you think that is too dangerous but I dont want to bother you guys anymore before we get some negative or positive breakthrough. Ive read all forums on pregabalin both in english and polish and plenty of people wrote that low dose (3 x 25mg) + fact that her body doesn't like this drug + the fact that after this time the therapeutic effects are at most miniscule since we didn't updose it like almost everybody does that suffers with severe withdrawal consequences = high probability that wd will not be severe. But time will show. Peace.

[Altostrata]

I'm sorry, Michael, we cannot help you design a drug regimen for your mother.