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My Story in a Nutshell


[Pi...]

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I had a blog on the 'old' BB and wasn't sure I would revisit the whole thing, but what the heck? I've been feeling lately like I want to Do Something, to contribute somehow. Maybe my experience can do that. Sometimes I think no one will want to listen to me because I'm 5 years in and not healed yet. People want to listen to healed people, ones that made it through to the other side. But then maybe that's just an excuse not to write anything, especially cuz I'm not quite sure how this new blog works. :unsure: But I'll give it a go.

So I'm not healed, but I feel pretty good. Not physically, necessarily, but mentally and spiritually. I enjoy life. I'm (mostly) happy. I have fun, appreciate the little things.  I've learned how to live well by going through this process and how to live well in the midst of it.  How to live in the present and to accept things how they are without wishing they were different. I've learned how to be grateful and how to find purpose in small things. I've learned things that I doubt I could have learned any other way, although I certainly wouldn't have chosen this particular circle of hell if I'd been able to choose.

So I'm just going to share my protocol. My mindset and philosophy and techniques and routine, lest it may help someone else endure and grow and keep up their hope through what is certainly one of the harder journeys there is. 

Here's my story in a nutshell: 10 years plus another 10 years on benzos with a pregnancy in between. Xanax, K and Ativan at different times. The first 10 years I largely go away with, though I did have weird symptoms from time to time. The second 10 really did me in. I was sick for almost all of them, particularly the final 3 years, by the end of which I was practically bedridden. Had all sorts of tests and no one could figure out what was wrong. No one ever suspected the drugs, they almost never do. Finally my doctor retired (thank God) and my new doctor wanted me to get off the things. This scared the crap out of me at the time, because I thought they were helping. Crazy, hey?

Anyway, I tapered (too fast), and even though I felt much worse, I didn't clue in that the drugs were the problem until about the 6 week mark. And even then I thought they'd maybe been part of the problem. It took another several weeks to realize that they'd been the entire problem from beginning to end. I was relieved to finally know what had caused my illness after all those years and I figured I'd be fine in a few months. HA!!

I did get better for 6 months, but then I started to get worse. Backwards, backwards, backwards. Then at about 2 years, slowly, slowly forwards. Very, very slowly. At first I was stubborn and didn't change much about my lifestyle. But by that 2 year mark, I realized I had to change and I had to change absolutely everything. My diet, my thinking, my daily habits...all of it. And I did. Every change I made brought me closer to a 'natural' lifestyle and I no longer look for quick fixes of any kind. I don't take anything, really, but for the off Tylenol and antihistamines during allergy season. I take no supplements but for Vitamin D in the winter, because I live in Canada and good luck getting it from the sun. I learned mindfulness and stress reduction techniques and was careful about my toxic load. I watched a lot of free conferences on healing trauma, on sleep, on holistic health, meditation, diet and rewiring the brain. I've tried some things that didn't help, some things that made me worse and some things that have really made a positive difference.

I celebrated 5 years off March 21 of this year. I'd put myself at 70% healed (on baseline days). Worse during waves, better on the odd 'good' day. I've never had what I would call a window, never been symptom free for even 5 minutes. I could be upset that it's taking so long, but mostly I'm really grateful to be where I am now as opposed to where I was when I was super ill and didn't even know what the problem was.

Current symptoms are a constant pulsing/pressure in the head, low energy, migraines, sensitivities (particularly to chemicals) and sometimes a dizzy/boaty feeling. Other things come and go back don't last very long, so aren't of much concern to me.

I'll continue to share what has helped me and how things go from here. Follow along if you want to!

Peace to all!

 

 

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[Bu...]

Posted

@[Pi...],

Thanks for starting this.  Your "origin" story is very much the same as mine.  I hadn't found a whole lot of other people who were so sick for so long on the drug with doctors not having a clue.  It bothered be a bit that I couldn't seem to find anyone else who was as sick as me for so very long.  So, I am sorry that you had/have to go through this, but I am so glad that I am not alone.

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[Ca...]

Posted

Very inspiring story. If you can enjoy life and have fun, in my book you're a smashing success.(y)

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[Pi...]

Posted

@[Bu...]  Yeah same! I hadn't heard of anyone who somehow didn't come across the answer for literally years, through the internet, usually. But the benzos just were not on my radar as a possible cause, so I never did any research on them. The fact that I'd been on them for an extended time previous to my pregnancy without having any massive problems just cemented the idea in my head that they were 'safe'. I truly never would have guessed. I don't like to think about what would have happened to me if my doctor hadn't retired. o_O Maybe that's partly why I mostly feel grateful now, even though I still don't feel well and can't do all the things I would like. Nothing could be worse than those horrible years of being increasingly ill and not knowing why.

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[Bu...]

Posted

@[Pi...],  Never were on my radar either.  Sometimes I still have a hard time believing that it caused all of it, and no matter how slow a process it is, I won't get any worse and probably will get better.  Seems too good to be true, if that makes sense.  I thought that I had some weird sort of auto-immune disease that was only going to get worse and worse, and now...well.

I'm working on that gratitude part.  It was 14 really important years for me.  Years when my husband and I wanted to start a family, so there's some grief there.  More days than not though, I am grateful. ❤

I'll be looking forward to more of your story.

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[Rh...]

Posted (edited)

Wow, you have really persevered!!!  

I am only 9 months off my antidepressant and have all your left over symptoms plus extreme nausea from the migraines.

Can I ask, since you’ve had migraines this whole time, mine are daily and I don’t know what to do.  They are so bad I cannot work, and barely function because the pain is so severe and disabling.  Do you have them a lot, or did you in the beginning and they got less and less?

They are my most worrisome and hardest symptom.

Thank you for this blog & I’ll be following.

Edited by [Rh...]
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[Pi...]

Posted

@[Rh...] When I was in tolerance withdrawal (still taking benzo and didn't realize it was basically poisoning me) I had migraine chronically and I had to quit working. When I went off benzos, they became episodic (as opposed to constant). I was a bit odd in that I got a lot better in the first 6 months off and then went backwards. So they were few, but then became regular, about 1 ever 3-6 weeks. That pattern stayed but they lessened in intensity. At this point, I get them in clusters, say 2 or 3 within a few weeks but then weeks without any. And they are less intense.

So basically, yes, they lessened in duration and severity over time. I usually take an antihistamine at the first sign of one, regular Tylenol if I need to and Ginger Gravol is great for nausea. I've become a purist and am also med-intolerant anyway, so I don't take anything else. I also find wearing a snug tuque helps for some reason and using ice at the base of the head/neck for 20 minutes at a time. And yellow glasses to block blue light.

Hope that helps. They are a challenge for sure!!

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[Rh...]

Posted

1 hour ago, [[P...] said:

@[Rh...] When I was in tolerance withdrawal (still taking benzo and didn't realize it was basically poisoning me) I had migraine chronically and I had to quit working. When I went off benzos, they became episodic (as opposed to constant). I was a bit odd in that I got a lot better in the first 6 months off and then went backwards. So they were few, but then became regular, about 1 ever 3-6 weeks. That pattern stayed but they lessened in intensity. At this point, I get them in clusters, say 2 or 3 within a few weeks but then weeks without any. And they are less intense.

So basically, yes, they lessened in duration and severity over time. I usually take an antihistamine at the first sign of one, regular Tylenol if I need to and Ginger Gravol is great for nausea. I've become a purist and am also med-intolerant anyway, so I don't take anything else. I also find wearing a snug tuque helps for some reason and using ice at the base of the head/neck for 20 minutes at a time. And yellow glasses to block blue light.

Hope that helps. They are a challenge for sure!!

Thank you for the info!  Mine are almost daily at this point and I just don’t know what to do…but the things you suggested I’ll try!

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