Update 2016: It’s become clear to me that whenever it’s possible that it’s helpful for folks who’ve not begun withdrawal and have the time to consider a carefully thought out plan to attempt to bring greater well-being to your body before starting the withdrawal. That means learning how to profoundly nourish your body/mind and spirit prior to beginning a withdrawal. For suggestions on how to go about doing that check the drop-down menus on this blog for ideas. Anything that helps you learn how to live well can be part of your plan. That plan will look different for everyone as we learn to follow our hearts and find our own unique paths in the world. Things to begin considering are diet, exercise and movement, meditation/contemplation etc. Paying attention to all these things as you do them helps too. The body will start letting us know what it needs as we learn to pay attention.
I made this list in December and included it in an update post. I was not yet drug free. Now as I approach 5 months of drug freedom, I thought I’d look at this as see how much things have changed. Some of the symptoms are gone, but way too many are still here and some have worsened. I note what has happened in bold. I’m still a very debilitated woman.
Just to make a disclaimer. The severity of my situation does not happen to everyone who withdraws from these drugs, but it’s by no means an isolated case. Getting debilitated is hardly unusual. I talk about benzos a lot because that is the community in which I get lots of corroborating anecdotes these days. The fact is, however, I have met people who have similar syndromes among just about every other class of psychiatric drug as well. If you’d like documentation of the horror these drugs cause please remember to read Robert Whitaker’s work.
And by the way, I’ve been very sick for 3 years now. For one year it’s been acute. The first two years it was purely physical. Now it’s got a mental component too. My neuropsychologist pointed out that it’s like a brain injury.
1. seizures/convulsions — did not lose consciousness, not true seizure I don’t think (no longer get these, though my body does do light jerking around from time to time)
2. disassociation (yes, still get this)
3. derealization (yes, still get this)
4. tics — vocal and physical (on occasion, yes, but less frequently)
5. muscle pain (yes, still get this…this pain can make me walk around like an old lady at times)
6. muscle atrophy (I am up more often and moving a bit, this is likely slowly reversing)
7. muscle spasms (not as frequent)
8. back pain (yes, still get this)
9. spinal pain (yes, still get this)
10. delirium (yes, still get this…this morning was awful)
11. flu-like feeling (bad flu) (yes, still get this)
12. numbness in hands (no longer)
13. numbness in face (yes, still get this and my skull now gets numb and tingly too)
14. hot and cold / problems with temp changes (yes, still get this)
15. migraines (yes, still get this and in fact had a dramatic ocular migraine as well)
16. severe chronic nausea (nausea is no longer around the clock but it still visits with extreme severity almost daily usually first thing in the morning)
17. severe drowsiness/sedation (yes, still get this)
18. irritability (yes, still get this)
19. crying (yes, I cry every single day…this is grief, pain and sheer frustration…many others report regular crying)
20. rage (this has greatly diminished, but still visits on occasion)
21. low blood pressure (I am now in the low range of normal and this is the biggest reason I can get out of bed now…it was so severe I couldn’t stand much for over a year)
22. eye strain (generally gone)
23. blurry vision (generally gone)
24. eye muscle spasms (generally gone)
25. visual hallucinations (aware of these, not psychotic) — (I now only see flashing lights when it starts getting dark)
26. audio hallucinations (same as above) (these are gone)
27. anorexia — not classic, no body image problems, simply severe lack of appetite (I eat again and have a normal appetite)
28. weight loss (I’ve gained the damn weight back! most people report this sort of yoyo – ing and then a evening out at the end…when I started eating again I gained weight simply because I’m still mostly immobilized…the fact is I eat only a fraction of what I used to eat when I was active)
29. memory loss (still have this…I forget things as they happen)
30. cognitive impairment in many ways (still have this)
31. inability to read more than a few sentences at a time (still have this…I remind folks I can’t even read most of what I post…I’m very good at the perfunctory task of culling the news and skimming articles to see what the gist is and cutting and pasting…THAT IS ALL…perfunctory business…it keeps me sane)
32. low stress tolerance (still have this)
33. sound sensitivity (painful to hear loud noises) — still have this
34. light sensitivity (painful to be in artificial light) — this has greatly diminished, but is still a problem from time to time.
35. sensitive to touch — this has diminished somewhat but on occasion is still severe.
36. fatigue — ha! what a misnomer…it’s crippling weakness…it’s diminished but is still out of the range most people could imagine.
37. insomnia — still have this
38. fear which seems physiological in large part and very intense — This got MUCH WORSE (paralyzing fear is NOT an exaggeration) most of the folks on the board talk of this. Calling it fear or anxiety is a joke…it resembles standard anxiety NOT AT ALL…what we experience is clearly completely IATROGNENIC hell and not normal by any standard. I call it TERROR and I NEVER had anything resembling this before I took meds…it’s a living nightmare…I don’t expect anyone but someone who has gone through benzo withdrawal to have a clue. Even those who went on benzos for panic attacks (I did not) say that this phenomena is out of the ballpark. So the drug “cure” is indeed far far worse than the disease. It’s diminished since the worst height of it but is still worse than when I listed it in December…it comes and goes in severity…horrible shit. The worst maybe.
39. despair — still there, perhaps diminished. I can see improvement even if my life is still hell
40. unable to be on my feet more than 5 minutes at a time — I can often get up longer periods now but I’ve been horribly housebound again lately
41. unable to sit up more than 5 minutes at a time — same, better
42. unable to converse through speech (because of sound sensitivity and cognitive difficulties both) — still have this issue…can’t fucking talk on the phone or even in person except rarely– some of my friends don’t take so kindly to this unfortunately. It’s very hard for people to understand…unless, again, one has experienced it. — I wrote a post on this here as it’s a common phenomena on the benzo boards that most people are not aware of.
43. heart palpitations — yes still frequent and in fact got much worse since the original list in December)
44. heart pain (chest pain — not cardiac) — also more frequent and worse since December.
45. difficulty breathing — more frequent and worse
46. extreme thirst — gone
47. sensitive to movement (like in a car — can’t tolerate) — less frequent I think but it still happens…I don’t get in the car hardly at all, but it used to make me feel like I was falling if my husband sat on the side of my bed and that doesn’t happen anymore.
48. upon stopping too much drug too fast — psychosis — remitted immediately upon starting up again (I’ve been done with drug so this is no longer an issue)
49. Confusion (still happens)
pain and pressure in my ears that feels almost like an infection — most people who have this have tinnitus too, so I’m very grateful I don’t have the tinnitus…though this makes me feel totally nuts sometimes…it’s awful.
I also have so many odd sensations that don’t have words…there are no words for such odd feelings…everyone on the boards talk about the numerous weird feelings. They are often totally overwhelming.