It gets better: Revisiting the withdrawal symptom list

The IT GETS BETTER collection is intended to help those who are currently dealing with the iatrogenic (medically caused) injury from psych meds…so that they might know that we can heal. The series will continue weekly for some time.

It is also intended to help educate the masses to the realities that we face. Protracted psychiatric drug withdrawal syndrome is real. It’s also sometimes gravely disabling. The fact is it’s largely denied in the medical community. We are routinely blamed and told that the experience is psychiatric…this leads to more drugging and sometimes forced drugging with the very drugs that have harmed us. This must end.
We have no societal support when we are coming through this heinous process either…many people have no familial or community support whatsoever. This is a dangerous reality.

We have no societal support when we are coming through this heinous process either…many people have no familial or community support whatsoever. This is a dangerous reality.

Please become educated. And please pass the information along in any way that makes sense, so that those of us struck with this can get the help we need and deserve.

Thank you.

See the series here: IT GETS BETTER

Most of these were written from within a dark fog of various sorts of pain and hellish sensations. I will be leaving them largely unedited, so consider that when perhaps something is not clear.

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#6 from the IT GETS BETTER series

Revisiting the withdrawal symptom list – things are slowly changing, getting better at a still glacial pace

**Most of the “symptoms” from the below post are now gone. To call them symptoms is another one of the ways language cannot do justice to experience. At one time a significant number of them were so severe they would have been disabling all on their own. In conjunction with one another they created a disability so completely acute and alienating that most people, unless they’ve experienced it, cannot imagine it.

DECEMBER 22, 2010

I first created this list in December of last year, so it makes sense to revisit it here a year later. I also revisited it in June of this year. It’s much easier for me to remember the changes I’ve come through by checking this list. The sheer number of extreme symptoms makes it hard to realize when some of them diminish or even disappear. By looking at this list it’s far easier to recognize and appreciate that my body is indeed healing slowly. This proved a very helpful exercise for me as the fact remains I’m still ill and sometimes it feels like nothing changes.

For those of you who may be new to this site, I withdrew from 6 psychiatric drugs in a little over 6 years. My body has had a some major adjustments to make. That post has gotten some of the most hits on this blog. It’s called “A Portrait of Poly Psychopharmacology” and it’s worth reading simply because that ridiculous journey onto an outlandish cocktail of psychiatric drugs is much more common than most people would think. I saw that post on reddit where all sorts of people who don’t read mental health blogs read it. The comments were quite eye-opening. People outside of the mental health communities have no idea how normal flagrant poly drugging is and it was dismissed at outlandish and I along with it as some sort of  nimwit who could not be trusted. Granted I feel like an idiot sometimes but far greater minds than mine have fallen for the poly psycho pharma myth. It seems to appeal to many people in our culture regardless of intellectual capacities.

So back to today. There are a few symptoms that have actually developed since the first writing of the symptom list in December, but many more have greatly diminished or are completely gone. It was quite nice to revisit this list and see how many improvements there have been. It’s sometimes easy to forget simply because my life is still extraordinarily difficult and I’m still mostly homebound. But heck, when I look closely at this list improvement is undeniable and steady even if slow.

I wrap up this long list with additional updating paragraphs at the end of this post, should the list get daunting, you can skip to the end.

The list:

1. seizures/convulsions — did not lose consciousness, not true seizure I don’t think

These have stopped, though my body does some spontaneous jerking around when I try to relax.

2. disassociation

This seems to have resolved in large part but not completely. Any dissociative stuff is unpleasant though for a while I thought it was going to be a serious issue. It seems that it was just the severe trauma I was enduring.

3. derealization

I still get a horribly drugged out feeling in which I feel like I’m nodding out about a week of the month. Feeling somewhat drugged out is still a 24/7 symptom as well. I’m not sure it’s derealization but it may be. I’ve really found no one who seems to experience this quite like I do which concerns me a bit.

4. tics — vocal and physical

Not as often but sometimes.

5. muscle pain

Still very severe at times, but not nearly as often.

6. muscle atrophy

I’m slowly getting fit again. I walk, ride a stationary bike, lift dumb bell weights, do yoga etc. There are still many days I can do nothing and I can only do tiny little workouts when I do them, but I’m doing it and I’m undeniably getting stronger.

7. muscle spasms

Not anymore

8. back pain

Still have some back pain, sometimes severe in the spine. Not as often though

9. spinal pain

see above

10. delirium

On occasion but not nearly as often or as intense.

11. flu-like feeling (bad crippling flu)

This is still not unusual but again not nearly as often or as all-pervasive.

12. numbness in hands

No more

13. numbness in face

This has become more frequent and is associated with heart palpitations and pain.

14. hot and cold / problems with temp changes

Not so bad anymore. Most likely normal

15. migraines

I had another ocular migraine which is intensely strange. It’s almost like a brief psychedelic trip. The aura of a migraine without the pain. Colors and visual distortions and strange feelings in my body. It’s quite crippling for a few hours. That happened fairly recently and others in withdrawal report the same.

16. severe chronic nausea

This was so severe for an entire year. While I still get frequent intermittent nausea…it’s nothing like it was for that year. Overpowering nausea all the time was one of the very worst symptoms of withdrawal for me. It’s mostly gone. Nausea is always a drag but what I experience now I could live with for the rest of my life with no problem. The ugliness of that chronic round the clock nausea was a nightmare.

17. severe drowsiness/sedation

Horrible still most of the time.

18. irritability

Not nearly as bad.

19. crying

Not nearly as frequent. Though crying was normal I have to say. This has been grossly traumatizing and acceptance has been a difficult journey. I still cry but not several times a day anymore.

20. rage

This is mostly gone. Very relieved about that. Living with frequent rage is a truly ugly place to be. (this is also so common in benzo circles that it has the nickname “benzo rage.” People understand immediately. It’s generally completely uncharacteristic of the people who experience it and quite overpowering. Others who have had their emotions muted on other psych drugs speak of the same phenomena very often as well.

21. low blood pressure

Still low but in the normal range. It used to be I could hardly stand up and it was like that for well over a year. Maybe over two years. (70/50 was not unusual. Now I’m at about 100/60)

22. eye strain

My eyes are still all messed up, but in different ways and less severe.

23. blurry vision

yes, sometimes. I look forward to being well enough to go see an eye doctor. I need glasses and just a general check up.

24. eye muscle spasms

Pretty much never anymore…these spasms were awful, scary and painful and all the time for a while.

25. visual hallucinations (aware of these, not psychotic)

NONE

26. audio hallucinations (same as above)

NONE

27. anorexia — not classic, no body image problems, simply severe lack of appetite

NONE

28. weight loss

my weight has stabilized. I suspect as I get more active I’ll lose more but in a more natural fashion

29. memory loss

still a lot

30. cognitive impairment in many ways

still significant cog issues

31. inability to read more than a few sentences at a time

this has improved, but I still can’t read much, including email. This is something that is most difficult.

32. low stress tolerance

Yes, still bad.

33. sound sensitivity (painful to hear loud noises)

Yes, still bad.

34. light sensitivity (painful to be in artificial light)

This is GREATLY IMPROVED. Though not gone completely.

35. sensitive to touch

GREATLY IMPROVED.

The above three sensitivity issues were covered in this post. Hyper-sensitivity of all the senses is a very common withdrawal symptom. There was a time where these issues were so severe I had to hide in my room with the lights out much of the time.

36. fatigue

Still out of control. Fatigue sounds normal. This fatigue is not normal in any sense. Still really awful and frustrating. I suppose it’s improved but not nearly enough to live a normal life.

37. insomnia

Intermittently still really bad. I also often sleep a full night of 8 or 9 hours which pretty much never happened for a couple of years. Most people report sleep patterns normalizing within 18 months. I’m close to 11 months now. Of course everyone is different so there are no expectations here.

38. fear which seems physiological in large part and very intense

This is still a problem and has developed into complex PTSD. It’s not at its peak though, it’s mildly better than the peak.

39. despair

off and on. Still grossly frustrated that I’m so impaired. Again, a normal reaction I think.

40. unable to be on my feet more than 5 minutes at a time

HUGELY improved. I still have to lie down a good part of the day every day, but most days I’m up and about off and on throughout the day. A week or two a month due to my hormone pattern I’m mostly in bed still but even then I’m up doing a bit on even my worst days.

41. unable to sit up more than 5 minutes at a time

HUGELY improved pretty much the same as above. I do need to lie down sometimes. Sitting, if I’ve been up on my feet is still too taxing much of the time. So often if I’m up I’m on my feet doing more strenuous stuff.  Then I need to lie down again.

42. unable to converse through speech (because of sound sensitivity and cognitive and neurological difficulties all) this is a link to a description of it…it happens to lots of us (the actual dysarthria is gone, but the other issues remain making it still difficult to communicate through speech on a regular basis)

This is one of the most difficult things for me to bear. I really miss speaking with people on a regular basis. Maybe more than anything else I can no longer do for the time being.

43. heart palpitations (a link to my experience of this)

HUGELY PROBLEMATIC…this has gotten worse, not better. Perhaps part of the PTSD…it’s awful, painful and scary. I’ve talked to a doctor friend and he assures me that because I have none of the other heart risk factors I’m fine and just need to hang on…it will pass eventually. It’s truly excruciating at times. So painful I scream.

44. heart pain (chest pain — not cardiac)

see above

45. difficulty breathing

yes, on occasion still bad and it’s generally associated with the above chest pain and heart palpitations.

46. extreme thirst

Nope

47. sensitive to movement (like in a car — can’t tolerate)

This is better than it used to be. I can go out more often, though it still strikes sometimes and I still stay home more often than go out in large part because my equilibrium gets so wonky in the car.

48. upon stopping too much drug too fast — psychosis — remitted immediately upon starting up again

BEEN DONE WITH WITHDRAWAL FOR 11 MONTHS. This is no longer an issue.

49. Confusion

yes, still sometimes, sometimes badly….but not as often.

(50) Something that wasn’t listed here on the original list is a horrible flashing I’d get in my eyeballs when the light started changing at night. I hated it, it was like being in a room with a strobe light–not quite as intense as that, but given my brain was doing it, any flashing was NOT a good thing. IT TOO IS GONE.

(51)Also not listed was the developing and worsening startle response that is most likely PTSD. This continues to be a serious issue.

(52) Another symptom that developed in February after my withdrawal was complete was a profound aching in my ears. It felt like I had a horrible ear infection in both ears. I talked to others who had that symptom and it seemed in most cases it was accompanied with tinnitus which I’ve been lucky to never have developed. In any case the awful congested and painful ear pain is gone as well. I had it for many months.

In the above link on symptom #43 about the heart palps I talk about rarely using propolonol, a beta blocker, which has a record for causing dependency and withdrawal issues if used daily.  On rare occasion because of extreme heart palps and pain I’ve needed to use it to make it through.

That has been necessary generally sometime during the week before and up to ovulation. My symptoms worsen at distinct times during my menstrual cycle. Because the dependency/addiction issue creeps up upon the 2nd use of proponolol if it’s used two days in a row I can’t use it more than once every 3 days during that rough one week or so a month time. (It loses effectiveness immediately unless the dose in increased so I simply don’t do that as I’ve been addicted and dependent on enough pharmaceuticals for a lifetime)

So at those times I sometimes have taken .25 mg of Risperdal. It’s a very rough call to make but staying safe, sane and in my home is a priority. .25 mg of Risperdal is less than 1/50th of the total dose of the drug I took at the peak of my use!! It allows me to get a few hours of sleep in what amounts to a crisis time.

The other thing that has helped tremendously if things get ramped up is acupuncture. It’s allowed me to minimize and mostly stop the need for this occasional chemical use. I started that at month 7. It’s been found in benzodiazepine circles that acupuncture while in active withdrawal and up to 6 months out after completing can actually worsen symptoms significantly. It’s important to be very careful about using acupuncture but at this juncture it’s been a clear and potent help for me.

For a further update, even though I have distinct cognitive problems and memory issues I have a clarity and lucidity in my thinking that I don’t ever remember having. This lucidity is what keeps me going and gives me an ultimate sense of satisfaction. I have found myself in this process, painful as it may have been and continues to be in many ways. I am clear that this was the best thing I could do for my well-being in the long run.

So that’s it. Painful and/or uncomfortable symptoms continue to slowly go away or improve. My life is still grossly limited by pain and fatigue of many kinds. The PTSD also limits me very badly. Still it was very good to go over this and get some perspective. I’m still very ill, but it’s clear my body is fighting and in the process of becoming healthy.

I’m still not able to communicate much or often by any means, but I’m writing and reading a bit more. Reading is still limited to short things. I cannot read books or even long articles.  The fact is I have to be very careful with all and any sort of stimulation as I’m still easily and often instantly overwhelmed. This is why I cannot read or respond to email. It’s truly a health saving measure. I speak to that here in a brief note to my readers

**(53)one of the most horrible insanity inducing symptoms I’ve had for about 6 months (that was also not on the original list) is a form of “formication” or “paresthesias” which in it’s most common form is the sensation of insects crawling on your skin. For me it’s not quite like that but it does feel like something is on my chest and neck…on the skin and right under the surface. There is no illusion that it is something actually there that one could see but the sensation is overpowering and maddening. I actually wasn’t feeling it the entire time I was writing this post (over a two day period) and this is what I mean…you can forget…as there are plenty of other symptoms to take up your mental energy and it is the nature of most of them that they come and go in severity. Well now the formication is back and so I thought I’d list it. It’s another cause of insomnia and general dismay when it’s really bad. It, like some of the other really extreme symptoms, are more apparent during particular times of the menstrual cycle. A doctor friend said this too is probably neurological and sometimes a sign of nerve damage and will pass in time. Sometimes it hurts besides being really annoying. I’ve heard of others in the benzo community that have dealt with this but it doesn’t seem as common as some other symptoms and mine also seems more extreme. Since I don’t have but a small handful of folks like me who were on all the other drugs I was on, it gets difficult to tease out. Well, really, it’s impossible.

Lastly, I’m adding a symptom a few days after I posted this. Some of the pain I experience I’ve not known what to call. I now have figured out that the most pervasive pain I experience is neuropathic pain. It’s intermittent but when it’s in full swing it’s also another one of the almost intolerable things I face. It was a relief to find a clinical term though I don’t know that it will be useful beyond definition.

For an updated article with the history of my tale of wild untested psychopharma gone bad visit Dr. David Healy’s website: Monica’s story: the aftermath of polypsychopharmacology 

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Many folks out there are now going through the heinous process of finding their way through psychiatric drug withdrawal syndrome and other iatrogenic injuries from psychiatric drugging. 

While many find their way through after weeks or months, for others it can take years to really get out of the deep disability and darkness it creates. I’m going to start reposting my personal pieces from those difficult days, so that people can see how far I’ve come and find hope that they too might come out of that darkness and find some peace and joy again. I know it’s possible from my own experience and from the many who have found healing and wellness again on this journey ahead of me and with me. 

See also: Psychiatric Drug Withdrawal and Protracted Withdrawal Syndrome Round-Up

See also: The anniversary posts: the 5 years off psychiatric drugs documented

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About Monica Cassani

Author/Editor Beyond Meds: Everything Matters