UPDATE 2018: I later learned that doctors, even this kind man who validated me couldn’t and didn’t know how to heal me or, beyond validating my experience, know how to help with supplements or anything at all really. I learned that in the end the sort of healing I was going through was so radical that it was truly at root, and most importantly, an inside job. While we need people to support us in allowing for our process at some point I needed to stop seeking answers from doctors who, just like us, don’t actually know what is happening. Healing happens in mystery and I needed to surrender to that mystery. I needed to stop seeking and drop more deeply into surrender and trust of life-force. I no longer seek answers from medical professionals or anyone really, but I do interact with many people who love and trust me and my process so that I might heal. It’s a different thing than seeking a fix. There is no fix to radical transformation. If you want to learn more about this more recent posts on this site are more helpful. I didn’t understand any of this when I wrote the below piece.
I’ve been working with a doctor whose specialty along with psychiatry is sleep disorders. I him at the recommendation of a friend who, like me, became seriously ill and debilitated as a result of psychiatric drug use and the subsequent withdrawal from them. For many of us the severe lack of sleep that happens as a result of withdrawal is perhaps in large part what keeps us ill. Unfortunately taking the usual (psychiatric) drugs to make one sleep will also keep many of us ill. So severe insomnia is something some of us must weather in one way or another for some time in order to get to the other side and become healthy again. I know many who have made that journey successfully.
Some percentage of us who’ve withdrawn from excessive amounts of psychiatric drugs or in some cases just a bad reaction to one psychiatric drug can become hypersensitive to any and all psychotropic medications as well as any other drugs and many supplements too that cross the blood/brain barrier. There is a spectrum as well with some people having more or less sensitivities. At the extreme, since many of these medicines are used in emergency treatment it’s actually dangerous for us to go to an emergency room even in a true emergency! A doctor who doesn’t understand the nature of the iatrogenic illness some of us have could actually kill us while doing standard care.
I was pleased to find a doctor who understood this. It’s been hell trying to work with anyone at all, whether they are conventional MDs or alternative doctors, virtually no one understands the nature of this hypersensitivity. I’ve watched hundreds of us in withdrawal groups get hurt over and over again by MDs who have not a clue. Most of us with the condition don’t understand how serious it is either and so we naively try things that hurt us again and again too. That is until we no longer trust any doctor at all because we’ve gotten hurt so many times. And that is a dangerous place to be in, even if it’s totally and completely reasonable and justified. It’s dangerous in the case of a true emergency and it’s dangerous in the event that someone gets so sick they need institutional care.
Most of us give up on finding anyone who can help or understand in any meaningful way and resort to allowing time to heal us. I’ve never done that completely though perhaps because I was so drastically ill and also ill for such a protracted amount of time and also I want to know what is going on and understand what my body needs that I might continue to help support and heal it in every way I can. I’ve picked up many bits and pieces of helpful information to do that from various doctors along the way as well as from numerous fellow sufferers. I’ve learned to be very discerning about who I trust and the fact is there are very few MDs in the world who can deal with these issues in a competent fashion.
Anyway, I found a doctor who not only knows what this hypersensitivity is and recognizes it but also knows how to help support my body that I might start sleeping again and stay away from medications once and for all. I needed for a long time to take intermittent micro doses of medication to sleep on occasions when I didn’t sleep at all for several days. It was scary to find out I couldn’t take anything at all anymore since I got hypersensitive to everything. So it was a relief to find him. He’s a scientist, a researcher and a doctor. Most psychiatrists are more like carpenters…they’ve got a hammer and the patient is the nail. Perhaps their bag of tricks have a few different colored hammers, but that’s it.
This guy tweaks my diet and now I use very carefully selected supplements too that support health but do not pass the blood/brain barrier. He also looks at the sorts of exercise I get and other lifestyle issues. I’ve been pleased to find out my instincts and the healing route I’ve been on has been what his research supports. Most astonishing this doctor does research with me specifically in mind. I’ve found that, perhaps sadly, most doctors do not do this pretty much ever. They either have a response from their bag of tricks that might help or they don’t — at which point they can hurt you if they believe you are statistically like the majority of their patients when in fact you are not.
So when I first met him I was in crisis not sleeping and in desperate shape. He first used a very tiny micro-dose of lamictal for about two weeks. That seemed to reset me and now I’m starting to sleep with no pharma at all. I had to use micro doses of risperdal (and whatever I could tolerate) from time to time before that and I knew it was bad for me, but to make matters worse, every drug I could use in micro doses ended up going south on me and even amounts as small as .1 mg started going paradoxical on me. Meaning it would jack me up –rather than sedate me — yes, the opposite response it was supposed to give. And yes, that is **point one milligram.** Tiny amounts of drug…amounts most people wouldn’t even feel…end up giving me radical adverse reactions now even though at one time I was on 100 times that amount!! That over-drugging hurt my brain and body both.
Even the lamictal which he used at 3 mg down to .01 mg over 2 weeks ended up going paradoxical on me too, but only after helping my brain readjust some way. This guy knows how to manipulate the damaged brain in some wondrous ways! In case you don’t know a normal psychiatric dose of lamictal is from 200mg to 400mg. So you see 3mg to .01 mg are truly micro-doses. He actually never uses high dose lamictal in psychiatry ever. He says it’s ALWAYS overkill. How refreshing and he’s a conventionally trained psychiatrist. He just actually paid attention to what he’s been doing with his patients for the last 20 or 30 years. He actually noticed the drugs were hurting people and thus adjusted his use of them, rather radically. What a concept.
I now cannot tolerate any drug that crosses the blood/brain barrier. Something about the extended use of multiple substances has damaged the barrier to the brain. I wish I understood this better to speak of it more scientifically, but that is not my forte. I’ve actually requested that a friend who is scientifically inclined and also suffers from this hypersensitivity to write a piece about the science behind this. I hope she’s able to do that and I can share that information here too.
The hypersensitivity includes many supplements as well. Supplements normal people take every day without feeling a thing. Things as benign as various of the B-vitamins and Inositol and most amino acids. The list actually goes on and on for me. Not everyone develops this sort of sensitivity and people develop different degrees of sensitivity too.
Anyway that was all an introduction to share part of a letter my doctor wrote in the event that I need emergency care of any kind I can alert the doctors of my condition. I also wear a medical alert bracelet with the major classes of drugs I need to stay away from.
When he sent me the email with a copy of his letter, I found that he’d also undiagnosed me. We’ve talked about this issue in the blogosphere for several years. Does anyone with a psychiatric diagnosis ever get undiagnosed? Not all that often. I don’t imagine this is official in any way since it’s still a part of my medical history, but I enjoyed reading that part of his letter in any case. I’ve known for quite some time that a psychiatric diagnosis was not really ever appropriate for me, but it was nice to hear it unasked for by a bonafide shrink. He clearly doesn’t think this illness that was created by the taking and the withdrawal of psychotropic drugs is psychiatric in any way.
Ms Cassani has had the unfortunate experience of receiving excessive psychiatric medications including high dosages, poly pharmacy and overly long exposure time. Side effects to certain medications were misconstrued as psychiatric symptoms leading to a snowball effect of increasing medications, more side effects and a dramatic decrease in function. Ms Kali has managed to slowly, but successfully, wean her self off these drugs over a period of years. She has been labeled with several different psychiatric diagnoses through the years but currently would not qualify for any of them. She is left with a nervous system that is easily overwhelmed by noise, stress, her menstrual cycle and any psychotrophic medications. She suffers from fragmented sleep, paresthesias, irritability and fatigue. These symptoms worsen during ovulation and menses.
Ms Kali’s current condition is such that almost all substances that cross the blood brain barrier are disruptive to her. In times of emergency it is crucial to avoid these types of medications for they will most likely cause a toxic reaction. She can tolerate brief exposures to beta-blockers (one to three days) but the best intervention is quiet isolation.
The drugs I can no longer take at all due to hypersensitivity and adverse reaction include but are not limited to: corticosteroids (injectable, oral, nasal and topical steroids too), quinolone antibiotics, antihistamines, benzodiazepines, narcotics and ALL psychotropics used in psychopharmacology. If you look at the classes of those drugs they are all very often used in emergency medicine. It’s a scary reality.
Anyway…my sleep is slowly returning. It’s slow and still horribly difficult but there have been big changes. I continue to be seriously disabled but there are many ways I continue to see improvement. It continues at a glacial pace.
I’ve explained the slow going to friends in this way: The fact is I’m much much better than I was at one time and I’m also still very very sick. That simply underscores just how sick I was. My mind boggles at what I’ve come through. It’s hard for me to fathom — no wonder those who do not live with me and haven’t gone through this themselves have such a hard time understanding.
A collection of links: Information and inspiration for the chronically ill
*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care. Really all doctors should always be willing to do this as we are all individuals and need to be treated as such. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up
For a multitude of ideas about how to create a life filled with safe alternatives to psychiatric drugs visit the drop-down menus at the top of this page.