Is my memory loss due to withdrawal or long-term benzo use?

[[Ha...]]

The worst and most persistent problems I have had since I got down below .5 mg in the Ativan taper are insomnia and memory loss/cognitive dysfunction.  Before that, I was functioning at a high level mentally, working at a demanding job (which I still have, but it gets harder and harder to do as I continue with the taper), and basically fine.  I did talk to my prescribing doctor when I started to notice the memory problems getting worse in the fall, and he said the insomnia was probably playing a big role and that it would not make sense to do any cognitive testing (ie for dementia) until I was able to get decent sleep.

 

Since then, the insomnia has gotten somewhat better, with the help of an occasional benadryl or sleeping pill (I know these are not good for me either, but I have to be able to function) but sleep is still not good.  By that I mean that even the nights that I manage to get a decent number of hours of sleep, I wake up feeling groggy and not refreshed.  In the meantime, I held for a long time at .375 mg but recently continued the taper, and all the while my memory has never gotten normal again, and since the most recent cut it has gotten even worse.  It's awful and scary.

 

My biggest fear is: how do I know if the memory loss is a temporary side effect of the taper, versus a permanent dementia caused by long-term benzo use? It does seem awfully coincidental that it started right when a reduction below .5 mg happened, but how do we know these things? My doctor is in no way benzo wise so I don't think he would have an answer for me.  I am middle aged, not old, so if it's dementia it would definitely be an early onset dementia.  I am absolutely terrified of that, and I don't know what to think.

 

Does anyone here have any knowledge or experience that might help answer my question, point me in the right direction, or provide some reassurance? I'm really struggling here.

 

Thanks,

 

Haimona

[[Pa...]]

 

My biggest fear is: how do I know if the memory loss is a temporary side effect of the taper, versus a permanent dementia caused by long-term benzo use?

 

I know it's hard to do but now isn't the time to diagnose yourself while taking, tapering or recovering from benzo's.  We're compromised in just about every way imaginable during this so it's normal to question our health and the fear makes us hyper vigilant but for me, everything came back better than before because it included gratitude to be well again. 

 

Try not to worry and read some success stories, they really helped me through this.

[[Ha...]]

 

My biggest fear is: how do I know if the memory loss is a temporary side effect of the taper, versus a permanent dementia caused by long-term benzo use?

 

We're compromised in just about every way imaginable during this so it's normal to question our health and the fear makes us hyper vigilant but for me, everything came back better than before because it included gratitude to be well again. 

 

 

Thanks for the speedy answer, Pamster.  Your advice makes a lot of sense, although it's easier said than done.  . Would you mind sharing what some of your symptoms were when you were going through the taper and withdrawal? Was memory impairment one of them? I know everyone is different, but it would help me to know what was going on with you that you got better from.

 

Thanks,

 

Haimona

[[Pa...]]

I quit cold turkey so my experience will be different than yours and to tell you the truth, it's been so long I can't remember details.  That's the great thing about this process, you can remember the experience but the horror fades.

 

I know I wrote everything down, I worked full time and I was so worried about my performance I took notes and made lists in an effort to keep ahead of my impairment.  I had pretty much the whole compliment of symptoms listed in chapter 3 of the Ashton manual and every single symptom left me totally unscathed, it's amazing how it works.

[[tr...]]

When I was in tolerance just before I jumped, I could not remember a lot. I'm a gardener and I was forgetting names of basic plants! So definitely benzo related. After my jump, slowly bit by bit things started coming back to me. I still get a cog fog day, but it isn't constant like it was int he beginning. when it happens there is still a memory loss moment, but then it kicks in again.

So I guess what I am saying is that it comes back, theres just days when it gets interrupted for a spell. Then theres days where I remember something small and irrelevant form 30 years ago!

 

Don't overthink it right now. your brain is just under stress. 

[[Ha...]]

Thanks for that, Pamster.  I've definitely started keeping lists and writing everything down too, which helps somewhat.  Was it really hard to work with the cognitive/memory issues? It is for me, partly because I'm so petrified of making a serious mistake or doing something where the issues become apparent to others.

 

Trina, I'm so glad to hear it is so much better for you now! I worry that my long-term use of prescription benzos has caused permanent brain damage, and I know there is starting to be a good deal of research showing this can happen (now they tell us  ).  I have days when I feel unsure of almost everything, the names of things, the names of people (they do come back to me, but that moment of uncertainty is so scary), how to do familiar tasks (again, I do recall these things, but it takes a moment), what day it is.  Terrifying.  I have been so tempted to updose, but the whole reason I started the taper was to avoid permanent memory loss in the future, and in case I don't already have that, I'd like to avoid it. 

 

Ugh, it's all so scary and I'm already anxious and jittery from the withdrawal. 

 

Thanks for the support, truly.

 

Haimona

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My opinion based on my experience is that it's the withdrawal and not long term use. I've been on a doctor-prescribed amount for fifteen years and it was only when I started tapering that I got the horrible symptoms. I still have a few months to go but I am convinced that I will return to normal when this is over.

[[Ha...]]

SRR, that's encouraging.  I have also been taking just what the doctor prescribed all these years, it was actually my idea to get off the clonazepam a few years ago and then the morning dose of the lorazepam.  As far as my doctor is concerned, it would be fine for me to take what I'm taking for the rest of my life. 

 

In the earlier parts of my taper, my symptoms were different: jitteriness, twitching, rapid heartbeats, trouble sleeping, rebound anxiety.  It was only when I got below .5 mg that the cognitive issues started.  I'm sure there is a GABA-related explanation for that, but I guess I'm not thinking clearly enough to figure it out.

 

Anyway, thanks for responding.  I hope both our issues clear up when our tapers are done (if not before!)

 

Haimona

[[Li...]]

In hope of allaying your concerns ...  the following large-scale, well-designed, recent studies did not find a causal link between benzodiazepines or Z-drug use and the development of Alzheimer’s or other dementias.

 

Osler M, Jørgensen MB: Associations of benzodiazepines, Z-drugs, and other anxiolytics with subsequent dementia in patients with affective disorders: a nationwide cohort and nested case- control study. Am J Psychiatry 2020; 177:497–505

 

Grossi CM, Richardson K, Fox C, et al. Anticholinergic and benzodiazepine medication use and risk of incident dementia: a UK cohort study. BMC Geriatr. 2019;19(1):276.

 

Richardson K, Mattishent K, Loke YK, et al. History of Benzodiazepine Prescriptions and Risk of Dementia: Possible Bias Due to Prevalent Users and Covariate Measurement Timing in a Nested Case-Control Study. Am J Epidemiol. 2019;188(7):1228-1236.

[[or...]]

My biggest fear is: how do I know if the memory loss is a temporary side effect of the taper, versus a permanent dementia caused by long-term benzo use?

 

Haimona, I think memory/cognition problems are a temporary s/x of withdrawal. At least that proved to be the case for me. I was as dumb as a post during my taper -- could hardly read anything and make sense of it. And I'm a writer! Words are my bread and butter. I despaired . . . but after I discontinued benzos, my cognitive abilities slowly came back. Ditto my ability to read and understand what I was reading as well as (thank God) my writing skills. (After I dumped benzos, I resumed novel-writing and have now had three books in a new series published).

 

So don't stress unduly. I think these losses are temporary. I don't understand the phenomenon so can't explain it to you -- all I can offer is my experience.

 

Hope this helps,

 

Katz

[[Ha...]]

Libertas, those studies certainly are interesting! It gives the impression that the causal link between benzos and memory loss is more controversial than I thought.  It does reinforce for me, though, that it's a really bad idea to use an occasional benadryl to help with my insomnia during the taper.  Sigh.  But thank you for sharing the information.

 

Oregonkatz, that is very helpful for me to hear! I've always been an avid reader, although lately it's hard to remember what I've read/am reading so I'm not reading that much due to frustration.  I'm so happy for you that you are writing again (and publishing!).  Were you taking benzos for a long time before your taper?

 

Haimona

[[or...]]

Haimona, I took benzos and a variety of psych drugs for 11 years prior to starting my taper. Because of them, the damage they did, and the horrors of my taper, I figure I lost 15 years of my productive life. BUT . . . I recovered. My therapist helped me though all this . . . and being on here helped me with the mechanics of my taper and proved me with a  group of individuals going through exactly what I was. It was a long miserable road, but now I can read something more challenging than  "See Spot Run". And write it, too. 

 

Best to you.

 

Katz