I don’t have “insomnia” so what is wrong?

[Cactus Bloom]

Hi everyone! I’m brand new and have been trying to understand why I don’t sleep but I don’t have what is called insomnia. With insomnia, people can’t fall asleep but eventually do fall asleep even for at least a couple hours. I understand that causes can be too much anxiety or too many thoughts that can’t stop or pain, etc. I literally do not sleep ever. It takes a lot of medications that needs to be changed constantly to even knock me out. I don’t ever get the feeling of sleep or being tired. I’m wide awake 24/7. There is no such thing as falling asleep at all unless I’m heavily medicated. Even then, no matter how many hours I sleep with the medication I’m up and wide awake and have never been drowsy from any medication. I’ve taken bottles of sleeping pills and will be wide awake. I have Dissociative Identity Disorder which is an umbrella of tons of diagnoses. I understand that the nervous system is in a constant state of hyperarousal with chronic PTSD but I haven’t found anything to explain why I literally cannot sleep. Also, another interesting thing is that I have had the most extreme form of narcolepsy lasting only about a week to two weeks tops only twice in my life. That was the only time I had ever felt what being tired or sleepy was like. Any help would be greatly appreciated.

 

[digger]

Have you had any sleep studies done? What do the professionals involved in your care think is going on for you?

 

[Cactus Bloom]

The only time I was asked to have a sleep study was when I had the narcolepsy the second time. I saw the specialist and since I was taking antidepressants and antipsychotics, he didn’t want me to stop taking my meds to do the sleep study. He just prescribed me 60 mg of Adderall. No matter what doctor, psychiatrist or therapists I have talked to in the past about it, none of them have listened to me. I take my medication that my doctor prescribes me because the different meds I take to sleep work right now. I am not currently going to therapy because I’m not in a city that has trained therapists to treat dissociative disorders. I’m great at researching things on my own since that’s the only way for me to understand myself but I’m going crazy looking for the answers to this.

 

[Justmehere]

Do you still have a diagnosis of narcolepsy? 60mg adderall is higher than typical for adhd but more common for narcolepsy. If they are thinking you have adhd, I’d suggest looking into a neuropsych eval. I have ADD and I get tired with stimulants and find that some sleep meds wake me up.

You describe not being able to sleep despite taking “bottles” of sleep medications. Taking more of sleep meds doesn’t always lead to more of a drowsy effect. If some of these sleep meds are antidepressants, by taking “bottles” of them, you could be jacking up your nervous system to go into overdrive even more by pushing certain neurotransmitter levels to be way too high. I’m glad you are now taking meds as prescribed and that might be part of why you now are able to sleep. Stay away from taking meds differently than prescribed and keep talking to your doc.

While therapists might not be trained in resolving DID sysmptoms they might be able to help considerably with sleep issues.

 

[Cactus Bloom]

I haven’t been able to sleep since I was 16 and I started to take a little bit melatonin and that helped me sleep a few hours. It wasn’t until more traumatic things happened that I no longer could sleep at all. I had seen a medical doctor and she had me try Ambien and I took it as prescribed but I’ve always felt like I have adrenaline running through my veins all of the time. By doing a lot of research into the fight/flight/freeze survival mechanism, I know that being in a chronic state of hyper vigilance, your nervous system can be stuck on. I didn’t start seeing a psychiatrist and therapist seriously until I was 36 and I’m 43 now. Previously I was on different antidepressants and antipsychotics prescribed by my medical doctors to try to help me sleep and when nothing was working I would stay awake for days and I was never tired. But I felt like crap so I did get desperate a couple of times and just kept taking the pills until they were gone and I didn’t feel tired at all. I don’t think I was officially diagnosed with narcolepsy but I was falling into a deep sleep as soon as I sat in my car to drive to work. I was falling asleep constantly and I had a very fast pace physical labor job. I was so good at it because I was in a constant state of major adrenaline rush. Then those could of weeks I would be walking to the break room and fall asleep as soon as I sat down. I was begging my medical doctor for anything to keep me awake because I was always falling asleep when I was driving to work and it was only a 7 minute drive. That’s when she sent me to the sleep specialist and he first told my doctor to prescribe me 30 mg of Adderall but I was still falling asleep. I was allowed to get 60 mg and even with that amount I was still sleepy but was doing a little better. I added a couple otc caffeine pills that I would take but as soon as I got home I would fall right to sleep. After that spell was over, I went right back to not sleeping at all. I had never abused my meds until about 6 years ago because of more trauma piled on and my mental state was not being able to keep shoving everything away. I started seeing a psychiatrist and he prescribed me 3 mg of xanax for anxiety and sleep. But, anxiety wasn’t keeping me awake because my altered states of being was constantly changing. I want to make it clear that I will never fall asleep without taking pills. I’m now taking 2 mg of clonazapam, clonidine and 6 otc sleeping pills (which I don’t tell my doctor about the otc pills). But, I have to take them in an exact same way that I’ve had to experiment with to make it work. I can’t just take the pills all at once and lay in bed and go to sleep. Two and a half hours before I plan to go to sleep, I take 3 otc pills and a half clonazapam. Two hours later I take one half clonidine, 1 mg clonazapam and the other 3 otc pills. A half hour later as I’m getting into bed, I take the other half of clonidine and sometimes I’ll fall asleep but if I haven’t within a half hour I’ll take the other half of the clonazapam. Seriously, if I do anything different than that I will not fall asleep so I do have a few extra clonazapam and clonidine just in case. My mom lives next door so she keeps all my sleep meds and I just go get the nights worth so I can’t keep taking them.

I’ve been reading a lot about the long term damage psych meds do to a persons brain and body and about the dangers of benzos withdrawals and sometimes get concerned if our world goes to crap I won’t be able to get them and I’m screwed. But I’m still screwed if I don’t take them. I’m going to get off my Lamictal and antidepressant slowly because they have never worked.

Therapist seriously suck here. The problem with dissociation and my defense “personality” states feel threatened and the only way to try to get around that is for me to feel safe and that I can trust the therapist to actually understand and listen. I showed up to see a new therapist and she had the whole list of diagnoses but at that time I was extremely thin. She was bound and determined to get me into an eating disorder clinic which was absolutely ridiculous because it costs over $30,000 a month and insurance doesn’t cover that at all. Then she tells me she doesn’t feel qualified to treat me and she found a woman who lives 3 hours away that may be able to help. But, she doesn’t accept Medicare and I need to see a therapist at least 3 times a week to even make any progress. Another therapist was so sweet and understanding for a couple of weeks so I really liked her but then she told me that she’s not there to hold my hand and for me “to stop kicking my shit onto others.” That was her reply when I told her how I was being shut down from my family because they don’t like “deep” conversations of any kind. I don’t even talk about myself. I was obsessed about all the new technology about our brains that was coming out. Yes, I will go through compulsive things like sending my siblings texts about all the amazing things I was learning. But she said that to me and Wow that made my heart hurt for days. I will be very manic and the therapist will try to treat that. Or depression which can be really bad for a certain amount of time then walla! All of a sudden no depression. I had the most wonderful therapist who lived in the state I used to live in but unfortunate circumstances happened where I had to move to a different state. Tried Skype but that didn’t work.

 

[EveHarrington]

There are various kinds of insomnia. What you describe as insomnia is actually only one kind of insomnia.

 

[joeylittle]

I will be very manic and the therapist will try to treat that. Or depression which can be really bad for a certain amount of time then walla! All of a sudden no depression.

Everything you describe has the hallmarks of something on the bipolar spectrum.

We aren't doctors, so this is just thoughts from folks on the internet who are fairly familiar with different diagnoses, and with the notion of being diagnosed incorrectly and how that can point down the wrong paths for medication and treatment.

Is there a reason you don't have a bipolar diagnosis? Has it been ruled out?

Being wide awake and unable to sleep, and not even feeling tired, is a good description of one aspect of mania. You also describe compulsive communication, topic fascination, and frustration with those who not engage with the topic as deeply as you do.

Bouts of depression that come and go rather suddenly is another indication of a cycling disorder.

 

[Cactus Bloom]

My first diagnoses was for bipolar. That was in my mid 20’s but really didn’t take it seriously. This is a list of my diagnoses: eating disorders, major depression, anxiety, panic attacks, bipolar 2 which was changed to bipolar 1, insomnia, PTSD, ADHD, OCD, kleptomania, agoraphobia, somatic symptoms disorder and DID. In order for the theory of me being manic to cause the not being able to sleep and always on high alert it would have to coexist with depression at the same time. My constant state of mania which allowed me to work extremely hard most of my life was always there in that sense. But, I would also have a textbook “bipolar manic episode” that would last (the longest one) about 9 months straight. And that was the on top of the world amazing manic with no anxiety or depression at all. I would have really bad depression and had no desire to live but I still wasn’t tired and I went to work and worked really hard and no one had any idea I was severely depressed. No matter what hell I was going through, I always went to work. I was raped and I got up and went to work the next day. That’s why the DID diagnoses fits more than bipolar even though it may be co occurring. I did some research on the HPA axis function yesterday and I think I found a lot of my answers there.

 

[joeylittle]

In order for the theory of me being manic to cause the not being able to sleep and always on high alert it would have to coexist with depression at the same time.

I don't believe that's considered accurate, for what it's worth. It may have been, in a previous DSM.

I would have really bad depression and had no desire to live but I still wasn’t tired and I went to work and worked really hard and no one had any idea I was severely depressed. No matter what hell I was going through, I always went to work.

I was very much like this too, through my teens, 20s, and 30s. Part of the depression symptom profile is inability to sleep, and whether or not you feel tired regardless isn't necessarily relevant. And, of course, part of the mania profile is also inability to sleep.

My constant state of mania which allowed me to work extremely hard most of my life was always there in that sense.

This isn't necessarily mania. It can also be fueled by anxiety as part of depression, stand-alone anxiety alongside depression, or simply personality trait.

But, I would also have a textbook “bipolar manic episode” that would last (the longest one) about 9 months straight. And that was the on top of the world amazing manic with no anxiety or depression at all.

If this top of the world feeling has happened more than once, and for more than 2 weeks more than once (which it sounds like it has), it would be worth you writing out your history with these - occurrence and duration - going back as far as you can remember, just so you can share with your prescriber, if you haven't already. There is a lot of important info, there.

I was raped and I got up and went to work the next day. That’s why the DID diagnoses fits more than bipolar even though it may be co occurring.

It's useful for you to remember that the drive and ability to work, despite trauma, does not have any relevance to DID when considered by itself. I'm sure you know that, just encouraging you to not minimize the potential for some form of bipolar, even if it is co-morbid with something else, as you say.

 

[Still Standing]

I am obviously not a doctor, but as I read your initial post and responses, to me it sounds like you may be bipolar. Then reading other's responses to the same, I'd say, it is really worth the consideration that this may be a driving factor for your high energy and sleep issue. You are also in such control of your own diagnosis and information gathering, that it sounds like it might actually be a hinderance for you to trust the diagnostic processes of doctors and therapists. I have a very long and complicated medical history, too. Through lots of adverse reactions to it from the medical docs, I have learned to only present the current issues without muddying the waters with information overload. They can digest my medical history on their own, without my input. Then they can come back and discuss those issues that they see as relevant. I don't have to divulge everything I have learned or tried to piece together. Maybe you are too insistent in keeping control on what you think might be best for you or what your diagnosis might be. It seems that the best way to help you is to take you off all medications and start over with testings and incorporating meds succinctly, and refraining from taking OTC meds, unless approved by the doc. If you are not sleeping with or without medicines, what difference would it make? What about trying a short interval of starting the investigative process over again, without the influences of prescription or over OTC drugs. Start from square one and see if a clean slate will reveal something that has been missed, in the past. What do you have to lose? This is what I would do.

Ps...whatever you do, it should be done under the oversight and direction of your doctor. I has to be hard having no answers, for the moment. But, there has to be a reason and answer for your problem. Let's hope you find a solution.

 

[Cactus Bloom]

I am obviously not a doctor, but as I read your initial post and responses, to me it sounds like...

I’ve already started to slowly get off my meds so I’m kind of excited to see how I feel. I know I’ll definitely have rebound depression and anxiety by being off of them but I’ve dealt with all that on them so it won’t be that big of a deal. Thank you for your response

I don't believe that's considered accurate, for what it's worth. It may have been, in a previous DS...

Thank you for your response. You have provided me with useful information and advice

 

[Still Standing]

Fionas74...are you cutting back off your meds with your doc's knowledge or are you doing this on your own. I would think it would be better to have a doctor overseeing this so he can keep track of how you react. If this is done outside of professional oversight, then you could be mucking up what your true baseline is for needed meds. or mix of meds. Don't cut back on your own, please.