Wed Mar 07, 2018 11:14 pm
I'll make a couple comments, 'open', but truly consider finding a good therapist. Many of the things you describe would call for therapy, before even getting into the caregiver issues. Caregivers eventually burn out if they don't care for themselves. I realize it can be hard to switch roles, but you would really benefit from having someone who can care for you too. As I type, I realize that people occasionally run into bad therapists, just like they run into bad doctors and bad plumbers... so patients in therapy, or in the doctor's office, should occasionally assess whether they are seeing the right person.
Sleep paralysis sounds horrible. I've never experienced it, but I've heard descriptions similar to the ones here, where patients described shadows that looked like demons, or black monsters sitting on their chests. One possible treatment would be a medium-duration benzo like temazepam or lorazepam, which can reduce the fear and maybe the experiences themselves. Of course there are practical issues to getting prescribed benzos, including perceived risk and true risk (risk of not being able to control them).
Both unipolar and bipolar depression can be difficult to treat. One thing that bothers me about psychiatry is that treatments can look more like art than science. There are treatment guidelines and protocols, but they all have a wide range of choices at each step in the process. Individual variables are so great that there is no way to determine, through studies, which treatments work best.
The positive side of that, though, is that a doctor willing to treat you as an individual has many different options to choose from. I don't know your medical history or psychiatric history so I can't give specific recommendations, but I'll describe the process of choosing the right approach for a hypothetical patient. The first issue is determining whether you truly do have bipolar depression, or whether you have unipolar depression that was misdiagnosed (which is very common). To be truly 'bipolar', a person must have an episode of true mania-- i.e. an episode that lasts at least the minimum time, and has the minimum number of criteria... assessed by someone who is trained to assess the symptoms in the right context and avoid any exaggeration or bending of the criteria.
I realize it sounds like I'm trying to talk like a professor- I just flip into certain words when talking about some topics.
If it is true bipolar depression the choices are more limited, but Lamictal, lithim, Latuda, Abilify, etc are common choices. But if you instead fit better in the unipolar depression category, there are many more options. Many psychiatrists will avoid getting too exotic with medications, and in some ways the psychiatrists 'of old' were more willing to step outside of standard treatments than modern psychiatrists, who are always aware of a regulator, pharmacist, or insurance administrator ready to tell them 'no'. All of those 'nos' serve purposes-- sometimes to reduce the cost of care, sometimes to reduce the risk of treating patients with substance disorders, sometimes to make care more efficient... but they also increase the challenges for patients who don't respond to standardized treatments.
Someone who has no energy, who worries about gaining weight, who lacks motivation and focus, etc may do well with augmentation using a stimulant, for example. The reduced addictiveness of Vyvanse has allowed greater use of that medication iin some cases. A doctor reluctant to prescribe stimulants could use bupropion in the same way, to boost dopamine and energy levels.
I just realized I'm going on and on here. I'm saying, don't give up on treatment. Give some thought to whether you're with the right psychiatrist, and find someone else if necessary. In my opinion any patient should at least feel comfortable asking about trying a medication, and a good doctor should be able to explain why that medication is or is not a good choice.
Hang in there, open, and take care of yourself. I mean that literally--- you must find a way to get away for a walk each day, and to find the things that interest you other than being a caretaker. Try to avoid assuming that people don't care about you(!) People are just so busy these days, running here and there and finding more and more ways to keep their minds occupied. Most times when people think they are being ignored, that isn't the case. In reality those people are just runing around trying to manage their lives. Who knows... maybe they think that you're not keeping in touch with them! We never know what's in other folks' minds.
Stick around, and you'll find some interesting stories. I hope you feel better soon.
Wed Mar 07, 2018 11:33 pm
OM, it is impossible for me to understand the level of pain you go through each and every day. I do hope that when you post here it helps some by getting it out. Please take our doctors advice and see if you can find a sympathetic therapist to talk to.
So many of us now know someone with Bi-Polar disorder. What a terrible diagnosis to deal with. My best friend had it and to witness the agony he went through is not something I'd wish on anyone.
Knowing so little about it, all I can say is to please reach out for help. We can only offer support here but it isn't enough.
Keep putting one foot in front of the other.
Thu Mar 08, 2018 10:13 am
I don’t have time to post right now, but I just want to say I’ve suffered from sleep paralysis for as long as I can remember. It’s terrifying- and I don’t think you’re crazy. Oftentimes I have feared I was going to die during an episode. A few if my family members suffer from it as well. At least least now there is a name for it, and it is recognized as a disorder experienced by many people. I will come back and post more about how I deal with it later. Just know you’re not alone.
Thu Mar 08, 2018 1:27 pm
OpenMind, oh my goodness at the wonderful posts u have gotten! Wow, what a great group of ppl! These posts even make me feel better lol
Sleep paralysis sounds absolutely terrifying. I've heard about it. I remember in the hospital once they had me on ambien and there was a time I couldn't tell if I was awake or not! I never took it again. Sleep issues like that can really make going to sleep dreadful. Just lack of sleep makes me an emotional mess.
Being a sole caregiver can be tough! Even if it's a single mother or caring for a family member, doing it alone can be so stressful. I remember when I was raising my children alone before my addiction kicked in, I was running on empty and miserable. I did have a full time job though and I used to look forward to work. I know it's taboo to say that but this is true. We become so involved with caring for others that there's no time for us. It can take a lot out of ya. I can only imagine the differences between children and a parent.
I hope u don't stress too much over the drop from 24mg to 16mg. The only way u will notice is just the routine of it all. I worried myself to death over dropping from 16 to 12. When it come time to drop, mentally I made it worse for myself, but physically it was not noticeable. What I'm saying is, we make it worse in our heads but we're addicts so that's completely understandable.
OpenMind, I know there's really nothing I can say to make things better for u, but maybe just hearing others experiences will help a little. And please keep this in mind, circumstances can change in an instant, in the blink of the eye. Something u feel stuck in right now can change immediately. Try to keep that outlook because I promise it is true. This isn't ur forever journey, things will and can change.
Thu Mar 08, 2018 7:21 pm
Wow, I really wasn't expecting such a warm response so quickly. I am deeply grateful to each one of you for taking the time to reach out to me. I feel a little overwhelmed. I don't like to be negative but when I joined this site, I promised myself to just let it all hang out... the good and the bad and not resort to putting up a front. I've been treated with nothing but kindness and respect ever since then and I can't tell you how good it feels to get these kinds of responses to the "real me".
I'm glad I'm not the only one to experience these frightening episodes at night, although I wouldn't wish them on anybody. They just started happening out of the blue. I do identify myself as a Christian and I've been devoting what little of my free time to learning about my faith. I can't help but wonder if that's playing a role. I guess common sense would say "yes" if someone is learning about prophecy, including "end time" events. We tend to relate what we experience with our core belief system.
I am frustrated with the quality of care I'm receiving both from my counselor and from my psych meds provider. Sessions with my counselor feel more like shooting the breeze with a friend. He's a really nice guy and he empathizes with my situation, but I don't feel like there's much "therapy" going on. My psych meds provider is at the same location. He's a new provider to the clinic and is replacing a woman I've been seeing for almost 9 years. I get the feeling that he just doesn't understand how desperate I feel. I've tried to relay that information as clearly as I can, but maybe it will just take him a while to get to know me and my personality.
I'm basically stuck with these providers. I saw a psychiatrist once a couple of months back through a referral from my primary care doctor, but my insurance told me they wouldn't cover seeing a med provider at one office and a counselor at another. They want it to all be under one roof and one clinic. I don't have many options now that I'm on a low income state funded insurance plan. I do appreciate your suggestions Dr. Junig. I plan on bringing them up next time I have an appointment. I see my counselor tomorrow. Maybe I should just tell him what's on my mind. I feel like I can be open with him. That's one of his good characteristics. Maybe he could help me to communicate my needs more clearly with the med provider.
All I know is that something has to give and soon. I can't continue on this path. It's not healthy and I don't like feeling so desperate. My thoughts are becoming increasingly dark and obsessive and that's just not like me. I know I need to focus on self care but my role as a caregiver is just so demanding. My dad and I are very close... sometimes too close. I feel all of his negativity as if it were my own. I know we are deeply enmeshed and I'm having a difficult time figuring out if my role is the son or the parent. Nobody prepared me for this and there's almost no one in person to lean on. My dad is a hermit and doesn't have friends that can act as a support system and safety net so it's all up to me. And I just don't know how to take care of two people a hundred percent of the time.
All I know is that I've got to find a way to figure this all out. It might take getting out of my comfort zone and trying to be much more assertive about the level of care that I need. At least I know that I can come here for support and that means more than you could possibly know. I had to say good bye to certain friends when I first started my treatment. They weren't ready to give up drugs and I needed to get away from them. It was very painful but it had to be done. I feel like I'm making new friends here that understand at least in part what I'm going through. I like having a place where we can all lean on each other. Thank you everyone!!
Sun Mar 11, 2018 8:56 pm
Just wanted to check in and see how you are doing. You’ve gotten some really good advice here, and I totally agree with you being more assertive with your treatment providers, and asking for what YOU need.
I just wanted to share what I have learned about sleep paralysis over the years (the night I read your post I had an episode). I have found that while paralyzed i can control only two things, my thinking and my breathing. It takes a lot of practice but you need to mentally tell yourself that you are in no real danger and you will be ok. Try to take deep breaths and tell yourself that you will either fall back to sleep or wake up (which is true).
I have gotten to the point with my breathing that if my husband is in the room I pant as hard and as loud as I can, and if he hears me he will wake me up. The first time he did it I asked him how he knew to wake me up, and he just said he could tell i was in distress. But I know that people often don’t have someone to wake them up (including me), so we just have to think and breathe our way through it on our own. It’s really hard. The other night I ended up waking up, and then i was terrified to go back to sleep (I often go back into the episode).
I personally haven’t had much experience with feeling an entity, but when I have, I have mentally shouted “you’re not real!” I mean, for all i know they ARE real, but for me telling them they’re not real helps me. Anyway, I hope something in this can help you. I’ve been thinking about you since you posted - just know that we are all here for you.
Mon Mar 12, 2018 11:53 am
You know guys? I've never researched this, but I wonder if sleep paralysis isn't some form of your body having a hard time transitioning between sleep cycles. The reason I wonder this is because Jacob used to have night terrors. (Not nightmares, because that's different.)
Jacob would usually "wake up" with night terrors before I went to sleep, so it was somewhere in his earlier sleep cycling. If any of you parents have had children with night terrors before, you know that it's both frightening and you feel helpless.
Jacob would wake screaming and yelling. I would rush to his room and to his side. I might as well have not been there! His eyes would be open, his pupils were hugely dilated, and he just looked right through me. He would cry for his mama when I was right there. He looked like he was seeing horrific things that scared him badly. He didn't want me to hold him because I didn't register as someone he knew, especially if I tried to make eye contact. He often tried to get up out of bed, but I corralled him while I calmly talked to him.
So what I would do is look away from him and say, "Your mommy loves you," over and over again during the few moments it would take him to calm down. As he got older, he would try to tell me what was going on and it never made any sense. As we talked, though, he would start to make sense and that's how I knew that he was back. Then I could say, "Are you ready to go back to sleep?" and he would crawl under the covers again. He usually didn't remember having the night terror, but if he did, it was only the tail part that he remembered; the part where he was back to himself.
By the time Jacob was 7 the night terrors were few and far between. The only time he would have them anymore was if he had a fever. Weird, right?
The reason I'm bringing up Jacob's experience is because I think it's the same sort of thing. Sleep paralysis must come during a change from one sleep cycle to another. I think Lilly's ideas about talking to yourself is a really good one. Even though Jacob didn't recognize me during these episodes, I still believe that he was positively affected by the statements I made in a calming voice. And I have talked myself out of nightmares before. Mostly I hope that these go away and you guys never have to deal with them again!
Fri Mar 16, 2018 6:25 pm
I just wanted to update you on my sleep issues. First of all, thank you for the comments and the advice. It's been about a week now since the last episode of sleep paralysis. I've been trying to prepare myself for sleep by listening to relaxing music or the sounds of the ocean right before going to bed. I think reducing my anxiety levels before going to sleep is making a difference.
I'm waking up almost every couple of hours and I don't normally get more than five to six hours of sleep a night... if I'm lucky. I almost feel like I'm waking up to prevent myself from having those episodes. It's almost as if I'm hyper vigilant about going into a deep sleep. Part of me is scared of experiencing it again and that adds to my anxiety. All I know is that even though I'm not getting a lot of sleep, which is normal for me, I am having normal dreams again and not nightmares. We'll see if it continues. Thanks again!!