I recall when my Dr retired and he worked till he was 72! Anyhow, no other Dr was willing to write for benz or sleep aides without you going to a psych for it. I fought and cried, went to urgent care as they dwindled and the ER. As a nurse I knew a 12year stint on the same dose cold turkey was going to probably kill me. I was fortunate enough at that time to have an urgent care Dr write for 30 days "till you find a Dr". I tapered as well as I could, it was a nightmare and I think the only other med that is just as hellish is methadone or suboxone to come off of.
I specifically recall on day 2 off of xan that I felt dissociation, that's where you don't recognize yourself really and almost feel like a stranger (surreal as fuck). I sat on my bed and cried to g-d, pretty loudly for help. I felt absolutely crazy. I had other bouts of anger (more like intense agitation), upset at myself for being in this mess (which I had no reason to be upset at ME for ptsd and a Dr retiring), I paced a lot and the sweats were awful. I think the night terrors were right up there with the dissociation in being surreal. They were horrific vivid terrible stuff.
I had 1 seizure and it was on day 2 or 3. It was while I slept because when I woke up I had dried blood all over one side of my face, my tongue was HUGE and I chipped a tooth. Obviously, I was terrified and went to the ER. It was confirmed that I had a seizure and was given 5mg of valium (30) to take twice a day for the withdrawal. Had I not had that I probably would have died. I wish I hadn't made the ex sleep in our guest room while I went through this, because I likely wouldn't have been so fragile. I didn't want to interrupt my family and their sleep/lives as this occurred. Now I know better - way better.
I'm also like a hound dog with smell, I can smell everything (thanks to a nose job). The rubber smell is very distinctive and overwhelming, if you ask if anyone else smells it and they don't - lay down and see if you experience any other seizure type warning signs. When you go through withdrawal, we all tend to over think every little thing as being "the end!". In reality, very few people experience every side effect. When you're coming off of something for anxiety though, all the worrying is amplified. My big suggestion to you is stay on here and away from forums that have horror stories everywhere. Often times those "stories" are planted by a certain "rehab" facility, it's great advertisement if you think about it. Usually they'll talk about how they were on the brink of death and through some miracle they were able to get help at said place and it "saved them!".
Just know that we all care about you and wish nothing but the best. You are far from alone in this battle, and you don't have to go through it with shame or holding anything in. Just remember that you're a great person and shit happens to everyone of us, we aren't pathetic or damaged for it either. You will get through this and come out of it the other side.
When I go through huge life changes I try to see it as a rebirth, maybe try looking at it in that sense.
For the most part, I can absolutely relate to your story and it's very motivating and moving. I'm so sorry you went through all of this though, I would never wish this upon anyone...
As you may see, I highlighted a few things which are notable, allow me to elaborate.
1) No doctor now-a-days even if you have been written a script for benz for over ten years will write you a script for it. At least the newer ones, as weird as this sounds the more experienced doctors seem to sit down to take the time to understand or at least try unlike the others allowing at least some sort of script to be made. This wasn't a struggle for me, but I did have a point in time where virtually no doctor would prescribe me what I needed when my doctor was on vacation and I was off my meds for weeks. I got lucky and one eventually came forward and gave me a one-time supply (small amount, I believe a 5 days supply) until she got back. As you and I know, even if you go back on them the withdrawals tend to last 24-48 hours after re-dosing. I just hope this new doctor (my doctor is moving) will give me what I need apposed from making me struggle to get it.
2) At first I didn't think it was going to be a nightmare...boy I was wrong. I thought seeing it was a taper it would be a cakewalk and was curious why it was such a big deal for most people. Now I know, or starting to know because it's getting rougher. The party's just starting and the nightmareish guests are starting to slowly arrive.
3) I do this a lot and frequently as if I'm a caged tiger when I'm under any sort of panic. They are indeed vivid and horrible things, sometimes I wake up from them and still feel the pain or fear from the dream transferring over for a specific amount of time like a few hours. However the PDST night terrors are nothing like nightmares. Some get them confused, but they're two different experiences at least in my book. I'd like to raise awareness for this.
4) I'm tapering with the same dosage and amount as we speak. It's not enough but as I've said, I'm in control of my body so I will not go higher seeing that's what my body wants. If I have to suffer for a few more weeks to be on a safer dose for the rest of my life then I'd say that's a good deal.
5) This is true, I overreact a lot to the point where I feel fear that I may not get my meds ever again, when will I see them, why am I feeling panic, just so much piles up at once along with the symptoms. It somewhat feels as if you're slowly dying which is the only way I can truly describe it.
These are just a few notable things, but none the less I do understand and you aswell are not alone. This has put me at ease for the most part and I can't thank you enough for this. It's as if you're reading my mind! Safest bet is just to get refills from a psychiatrist even though they tend to cost more to see for the most part there won't be any issues.
You and many others here on the forums that are backing me up will have a story to tell, that you saved somebody from ruining their life with these medications.
Without the support, I would of caved in already and continued my routine perhaps even trying to get on a higher dose just to feel better. It would be that vicious cycle all over again...and I have all of you to thank for this.
Regards,
-VII
