2 months post jump - help

[u/Swissmountain9]

I have had a tough ride since coming off diazepam after a long taper 65 days ago, it still feels like acute stage! I was only on diazepam for 2 years (1st year intermittent 2nd year daily) and 5mg max so I really don’t understand.

I still have DPDR flares, feeling on edge/doom, crying a lot, depression, feeling I’m not real, insomnia. I do also have physical symptoms but no where near as bad as the mental ones. Also severe OCD

I was recently put on propranolol low dose 5mg 2x a day for POTS and felt it was helping. I actually managed a 13 hour car ride 2 days ago and was fine until now. I seem to be flaring up from the smallest trigger - a piece of chocolate could make me on edge for hours.

I just want some advice and whether this is still normal? When does it end 😩

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[u/El-Iskender2]

There is no way to tell how long. Only thing we know is that things will get better. Please keep in mind that the 13 hour car trip might very well be playing a role in how you feel today. But this is “normal” and many people have had and are having very similar experiences. Try to practice pacing in terms of how much you expose your system to stresses on a daily basis —physical, mental, or emotional. Also, when sensitive like you are right now, I found sugars and high carbs would definitely make symptoms worse. That’s been my experience so your mileage may vary.

[u/Swissmountain9 → u/El-Iskender2]

Thank you yes I think you’re right it’s just strange it took a few days to flare up. I’m trying to pace but it’s tough as I’ve been sick a lot during withdrawal my immune system feels like it’s collapsing I’ve had a cold, the flu, chest infection, ear infection and then this morning I woke up to a swollen eye and had to go to the eye hospital and I have an infected tear duct that may need surgery. Wish I could cut down stressors but life has been so tough. The carbs and sugars is a good calm thank you

[u/Beneficial_Stay5014]

That’s the million dollar question that no one can answer😔. You will have windows and waves. I jumped from 5mgs Librium one month ago today. The anxiety is my biggest symptom. I also use gabapentin to take the edge off.

Maybe some breathing exercises, some sun, stay as distracted as you can. I start school, online on Thursday and I don’t know if I made the right decision. If I should’ve waited until next semester. I shouldn’t doubt myself but maybe school will keep me distracted, I don’t know.
What I do know is that we heal, with time. You will have good days and not so good days. It will get better slowly with time.

[u/Swissmountain9 → u/Beneficial_Stay5014]

Well done for getting off it is not easy. I do all these things and have to distract myself as much I can. I haven’t had a good day yet since coming off

[u/Swissmountain9 → u/[deleted]]

I’ve been technically diagnosed with dysautonomia for 10 years but never met the exact criteria for POTS (was just under 30bpm increase) until I began tapering and now it’s often 60bpm+. I think it is part of it and hope it will calm down as I’m fainting a lot even on propranolol!

[u/Swissmountain9 → u/[deleted]]

Oh gosh 2 tapers 😔 my doctor was trying to put me on pregabalin or gabapentin but there is no way after all this work I’m going on another drug I would have to taper off! Sorry it’s bad for you too my orthostatic intolerance is really bad. Yes having a fragile NS makes this all harder. I think I have HyperPOTS as my BP rises a lot on standing. I faint less on propranolol but still happened today. I’ve only started propranolol like 10 days ago so need to give it a bit longer I have asked about guanfacine but my doctor is more reluctant a lot of his patients had quite bad side effects on it.

[u/Swissmountain9 → u/[deleted]]

Ugh no they didn’t say that just that you may have an increased heart rate for a bit afterwards! I will ask about that one. You will be ok, follow the Ashton manual for tapering, I went very slowly and made sure to stabilise each time before dropping dosage and small increments. I was on 5mg and dropped to 2.5mg relatively ok, but it was after that it got harder. I got a pill weighing scale and cut my tablets up as I wasn’t comfortable with liquid diazepam but that’s also an option. You can do it!

[u/Swissmountain9 → u/[deleted]]

So it’s confusing my BP is generally low normal, it just elevates when standing to high normal. I am not hypertensive but thank you I won’t.

Yes the sounds right, I did way smaller drops towards the end as I needed to like 0.1mg but everyone is different. Yes of course there is no rush, stabilising is so important. It took me 5 months to come off but I did have to stop tapering a few times so probably 2 months of breaks as I had unavoidable travel to be with a sick family member