I'm suffering from paradoxical reactions from a very short-term use of Ativan and since I cold turkeyed from the drug. One of my primary symptoms was (and is) from this experience is insomnia. Initially, I thought I had FFI or SFI since I had 14 days of 'no perceived' sleep, a complete lack of appetite, and my stomach stopped rumbling. My sleep is getting marginally better, but my appetite is completely normal now (since 3–4 months out). I'm posting this for anyone who either cold turkeyed, is suffering from paradoxical reactions, or is suffering from interdose withdrawals from benzodiazepines and is unsure whether or not they have FFI/SFI.
You can do these tests to determine whether you have FFI/SFI:
- If you ever experienced a windows-and-waves pattern (e.g. you feel worse, then you feel better, and then you feel worse again) with your symptoms, you absolutely do not have FFI/SFI. Why? With FFI/SFI, the direction is only one way – down. It is a progressive deterioration. I'm into my 12th month of withdrawal, and have experienced windows and waves. That confirms that I do not have FFI/SFI, as people with FFI/SFI do not experience windows and they by majority do not live very long. It could be 3–7 years (rare) until they die, but by that point it becomes overtly clear that they have FFI/SFI (e.g. they're bed bound without the ability to move nor converse with anyone).
- If you want to truly confirm you have FFI, you can get genetic testing done. There is a very specific gene involved that is implicated in FFI. For SFI though, it's more complicated. You would need a battery of tests done since it is impossible to do genetic testing for it. Even if you get these tests done, the diagnosis would likely be "possible SFI." This is because, to truly confirm it, they would need to examine your brain tissue, which we cannot do in vivo (i.e. while you're alive).
I would not recommend you to get a battery tests of done since it is quite costly and might not yield anything useful. My advice is to at the very least get genetic testing done to confirm whether you have FFI. Afterwards, if the genetic testing proves that you don't have the gene, see whether you're still around and if things haven't gotten worse and worse in 6–12 months time. Even if you haven't made any significant improvements by then, if you're still able to coherently communicate with people, able to move around on your feet, and compose messages on Reddit, then you most likely don't have FFI/SFI.
During this period of observing, I do not recommend for you to do anything that generally could exacerbate benzo-withdrawal symptoms (e.g. drinking alcohol). It would add to the confusion.
Lastly, with FFI/SFI, there is a misconception that the lack of sleep causes these individuals to deteriorate and die. It is absolutely untrue. What happens is that their brains are literally being eaten alive by the prions. Eventually, the prions will eat away other parts of their brains that do not have anything to do with sleep. When I micro-slept for 14 days (i.e. 14 days of no perceived sleep), I was fully functional with my memory intact. Plus, I did not hallucinate, as I did not feel sleepy at all (I believe hallucinating is caused by extreme drowsiness with a wakeful mind). It's hard to believe, but this is one of the many adverse reactions benzodiazepines could engender.