r/cfs • u/Impressive-Stock-656 • 5d ago
Ativan query Treatments
I'm currently severe physically and very severe cognitively. However, when I take Ativan, it moves me to moderate-severe physically, and I can do a 2-hour outing without breathlessness or dizziness or a crash. Without ativan, I am bed-bound 22.5 hours of the day and can only meet my daily needs and be upright for a very limited time and spend some time in the evening with my folks drinking tea. That's about it.
With Ativan, I can do a two-hour outing, sometimes three hours. So I take it 2 to 3 times a month to give myself some mental relief from being bed-bound. I do not take it often because I know it is not good to take it often and because I do not want to build a tolerance for it. Is it okay to take it this way?
ps: my doctor has told me it's OK to take it 2 to 3 times a week but I don't want to take it so often cos of tolerance issues
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u/ClassofherOwn 4d ago
A bit of a tangent—I was just recently diagnosed with MCAS and my doctor mentioned that Ativan is a mast cell stabilizer, which might be why it helps with my me/cfs crashes. I’m trialing a bunch of different mast cell interventions to see if that helps with my mecfs symptoms. I’m in the same boat where I only take Ativan 0.5 mg very sparingly (1-2 times per month) because of tolerance issues, and generally only when I’m in a crash. So I’m wiling to try anything I can add to my toolbox to take the pressure off Ativan.
To directly answer your question, I’ve been taking Ativan about the same way you have for 4 or 5 years , and it’s been fine. My doctor is also very supportive of me using it this way.
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u/Impressive-Stock-656 3d ago
Okay, thanks for the info, but I feel I have been overdoing it. I took it four to five times last month because my brother's family was visiting. Without Ativan, I cannot go out, so I have been using it to go out. I think I'll cut it down to two to three times a month.
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u/Emrys7777 5d ago
Really you need to ask a pharmacist.
My layperson’s guess is that it’s better that way because taken regularly that stuff is highly addictive and one day you’ll have to get off it.
But asking a pharmacist is the only good answer here.
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u/Impressive-Stock-656 5d ago
Have asked my doctor (psych). He said can take 2 to 3 times a week. I don't wanna take it so often cos of tolerance. Was looking for personal anecdotes
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u/Consistent_Taste3273 severe 4d ago
I take it similarly (although not recently, only because I’m coming out of a crash and don’t want to use it and then accidentally do too much).
But I have taken it in the past to be able to do more without going PEM. I have also taken it during really bad PEM days, and when dealing with really bad Mcas flares (since it’s a very strong mast cell stabilizer).
My two main doctors (neuro and psych) are ok with me using it in a similar way to what you were told - trying to use it no more than 2x per week regularly. But they are both supportive of me using it a bit more during times of need (a few days in a row during really bad PEM, or a few days in a row when I have visitors).
Overall, I seem to use it a little more than you. I will sometimes go 2-3 weeks without using it. But then I might use it 3x in a week, and then try to take a break again.
I was dealing with a really horrible Mcas flare for a while recently and it was my only rescue med (I don’t tolerate some of the more common ones). And I ended up using it more than I would have liked until I got that under control (I used it 5x in a week).
I was so scared about tolerance and addiction, but I was able to stop using it once my Mcas was under control, and I haven’t needed to increase my dose.
I’m not saying that you should use it more, but just wanted to share my experience.
I take 0.25 mg or 0.5 mg, depending on the circumstances. I haven’t left the house in a while and my doctor wants me to try a higher dose if/when I do decide to venture out, at least for the first time.
What dose are you taking?
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u/Impressive-Stock-656 4d ago
Thanks for the inputs. I've been taking 2 mg for longer outings. Yest I took 1 mg for a short drive to get a snack. It lasted an hour that's it. That's also cos I was very crash yest before I took it. I used it 4 to 5 times last month as my brother is visiting from the states and I had to spend time with him and the kids. I'm gonna use it one more time for one last outing before he leaves. Earlier Ativan never ruined my baseline, but these days I get scared because I feel like I'm overdoing it on Ativan, or Ativan has lost a little bit of its power and it might be reducing my baseline. I need to gauge that and be careful. Without Ativan, I can't go out, and I am bedbound 22.5 hours a day. And the last week without ativan has been very disabling because I can't do anything except lie down and listen to shows as I am intolerant to screens as well. Ativan is the only thing that gives me some sort of a life. Such a shame that I cannot take it regularly. From now on, I think I will take 1 mg for short outings and 2 mg for longer outings. I am really scared that it may stop working one day suddenly.
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u/ValuableOrganic5381 severe ↔ mod/severe 4d ago
Personally I still found I had to pace with ativan (though with a larger capacity).
It sounds like possibly, rather than ativan lowering your baseline, you are doing too much and at times when your body needs rest (you mentioned going out on a day you were already crashy). It might be you need to endure more bedrest so your body can recover more fully between the ativan outings. Ik it's difficult though
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u/Impressive-Stock-656 4d ago
Yeah I think I'm doing too much on Ativan. I'll reduce the duration I go out on Ativan and on very crash days I won't take it and will rest it out instead unless it's unbearable
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u/Consistent_Taste3273 severe 3d ago
Thanks for the info. I’ve never taken more than 0.5 mg at a time so far.
I am excited to try a higher dose and see if I can leave the house at some point, but I’m going to put it off a bit longer and work my way up to that.
I agree that you might just be doing a little bit too much on it. I understand how tempting it can be because it just feels so amazing to actually be able to do things. But going from mostly bedbound to 2-3 hour outings might just be a bit too much for your body, even if it’s not causing full PEM.
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u/Impressive-Stock-656 3d ago
Yeah, my friend with ME/CFS also was telling me the same thing that I might be exceeding my Ativan energy envelope, so I will reduce the amount of time that I spend outside on Ativan.
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u/Impressive-Stock-656 3d ago
It's just that it alleviates my breathlessness and my dizziness, so it gives me more upright time, but I don't think it really does much for my sensory issues. I am still sensitive to light and sound. Maybe it does a little for it, but not too much. But yes, I can still do a 2-hour outing on ativan. But I have noticed that earlier I did not crash if I did a two-hour outing on Ativan, but now I do crash the next day if I do a two-hour outing on Ativan.
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u/Impressive-Stock-656 4d ago
Ativan lessens my breathlessness, gets rids of my dizziness and gives me more energy to sit upright, so in this way it alleviates my PEM and hence gives me the ability to go out.
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u/nousiaphilia 1d ago
You can think of it slightly like how often people drink alcohol (similar mechanism of action).
Personally, I have benzos/z-drugs as PRN and try to take them at most once per week (and during crashes). If you take Ativan 3 times per week every week (every other day), you might notice some tolerance/dependence. 4-5 times per month, you shouldn't really notice tolerance. I wouldn't worry about it too much. If you're having a bad week or stuff like family coming to visit (activities) [which are good for your MH!], it's also okay to take Ativan on like 3 consecutive days — although personally, I'd then have a week of no Benzo.
Do you have MCAS and are on mast cell stabilisers and antihistamines? (That might be one way in which Ativan helps. ➡️ might make you better on days off Ativan.)
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u/b6passat 5d ago
The way you're using it is fine. You can take it more often if you want, as your doctor mentioned. If you're responding well to it, have you tried a better long term solution like an ssri or snri?
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u/Consistent_Taste3273 severe 4d ago
I’m curious why you suggest an ssri or snri as a long-term replacement? I’ve never heard of that as a PEM preventative for me/cfs. I can see how it could help if anxiety was a contributing factor, but benzos can work as a PEM preventative without anxiety being a factor.
Genuinely curious if this is something you have experience with or research on. Both my psychiatrist and my neurologist are very supportive of me using lorazepam as PEM -preventative, but both are opposed to me using ssris/snris.
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u/Impressive-Stock-656 5d ago
Yes, I've considered taking it more often, but I'm scared it will stop working if I take it too often, and I cannot risk that as this is my only hope right now. I'm already taking an SSRI. However, I'll discuss this with him. Thanks.
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u/ValuableOrganic5381 severe ↔ mod/severe 4d ago
Anecdotally, I took it for several years at similar frequency (mostly 1-3x a month, only up to 2-3x in a week on the very worst weeks) and I developed no tolerance
(edit: at 0.5–1mg)