Hi,
Please help me. It's 5.15 a.m. and I am afraid to sleep. On May 11th I had my first DPDR episode, which was a totally new and terrifying experience for me. I have C-PTSD, Depression, OCD, social anxiety, general anxiety, and hypnagogia. Hypnagogia is that moment when you are just between sleep and wakefulness--sometimes you feel like you're falling and will jerk your legs to stop yourself? That's the simplest explanation; however, hypnagogia can evolve into hallucinations (auditory and visual). As I am falling asleep, I jolt up because I am in danger. I may think I'm back with my ex-husband, or I've seen gruesome things that scare the hell out of me. I have been involved with therapists and shrinks for 22 years. I am not bi-polar, BP, schizophrenic, or psychotic. It's all been ruled out. With the hypnagogia came insomnia. Before May 11, I went to sleep around 4 a.m. and woke up at 1 p.m.
It's bloody light outside and I can hear the birds. Every day since May 11, I have experienced episodic DPDR. I video chatted with both my therapists, GP, and shrink. They all agree it's DPDR. I started EMDR in the last year and in April my EMDR therapist was having me deal with the beginning of my relationship with my ex-husband. I didn't know that I wasn't supposed to "remember" or "go back" with all five senses. My EMDR therapist thinks I re-traumatized myself but also believes that the decade anniversary of my divorce and one-year anniversary of my little kitty getting sick and dying last August has brought all this on.
I work from home as a freelance editor. But, I can't work with DPDR. My brain is foggy and my short-term memory is shot. Even when I come out of a DPDR episode, I still don't have the mental acumen I used to have. I totally forget what I am talking about mid-sentence. My DPDR starts around 3 p.m. every day and "ends" between 8 and 11 p.m. So I am sleeping during the hours when I am actually in my body and not afraid. I know people suffer from DPDR chronically for weeks, months, and years. I am blessed to have it episodically, but I can't "live" normally. There is no way I will leave the house. I can't edit properly because my brain doesn't work. I've been blessed with my intellect--but my brain fails me now. I mistype, misspeak, and can't focus. All that I have gone through---I've always had my brain. I can't depend on that now.
I am so overwhelmed. I'm sorry I'm rambling. Sleeping pills don't work. I tried them all. Literally. I dread each day because an hour or so after I wake up I derealize and then depersonalize. Around 4 or 5 p.m., the DPDR gets really bad. It's like I am not tethered to reality. I can't grasp my sense of self...that is the best way to describe it. I am terrified for this hour. I "go away." A voice in my head (not an auditory hallucination or external voice) tells me to lay my head down and not engage. Usually, this happens when I am talking about something that is upsetting to me. It sounds so bloody cliche. I "go away" when I talk about the past. My brain just is closed. Sometimes I have flashbacks and other times I feel like I am high. My head is floaty. My voice is sedated. I have combed the internet for information and there is very little. I am only the second person my shrink has ever seen who has this disorder. Time stretches on for hours when I am in DPDR. I feel like I am high, but not in a good way. Yes, I use medical marijuana to sleep and for my panic attacks, which are full-body seizures at their worst. I could count on my two hands how many times I did pot as a teenager and in college. But, it changed my life with its ability to quell my panic attacks and give me a break from my constant, relentless, cruel inner monologue.
I know that marijuana can lead to DPDR; however, I am 44 and I have been vaping medical marijuana for three and a half years now. If I don't vape marijuana, the hypnagogia is untenable. Please, I'm sorry, I just don't want to hear that marijuana is causing this problem. It's not. Not in my case. I am very in tune with my body. I never reacted badly to vaping--I am a silly, happy, person with medical marijuana. I also use a lot of medical-grade CBD. So much of what I find online is young adults talking about how they can live with DPDR--they can function. I cannot. I can't talk or think correctly. I am terrified. Even though I know it's all "not real," it sure feels that way. My eyes see my keyboard and my brain is telling me that it's not a keyboard--it's not right,..there is something wrong. It's not real. My voice is not my own.
How do I deal? I have a workbook, I do art therapy and grounding techniques, but I could not be cognizant to even fake normality when I am in any stage of DPDR. I literally feel like I am losing my mind. Every day, four to eight hours are spent in DPDR. Wasted time. This is not a way to live. What can I do? How do I cope? How do I sleep and face each day filled with hours of terror? I lived like that for so long with my ex-husband. That experience, plus growing up in a domestically abusive household, brought me to a suicide attempt in 2014.
I have this incredible husband and I just want to live in the present with him. He is 25 years my senior. So, he's 69. He is a professional musician, but COVID hit the entertainment business with a vengeance. He is so good to me, but he took care of his first wife 24/7 for almost ten years because she had progressive, aggressive MS. He should not have to suffer this again. I have my Faith, but I am angry as hell with God. I never asked "why me" until my mother had breast cancer (cancer-free, thanks be to God and good doctors) when my little kitty lost one and then the other eye and her jaw locked shut. I spoon-fed her until the end. And, now. I am asking "why me?"
I feel so desperate and in such despair...any advice would be helpful. I know I write that, but previously I said I don't want to hear how marijuana is causing DPDR. It's about trauma for me. Unresolved trauma and living in a necessary fight-or-flight response for almost seven years. ECT. Counseling. EMDR. Help...I feel like my life as I knew it is over.
Please help me. It's 5.15 a.m. and I am afraid to sleep. On May 11th I had my first DPDR episode, which was a totally new and terrifying experience for me. I have C-PTSD, Depression, OCD, social anxiety, general anxiety, and hypnagogia. Hypnagogia is that moment when you are just between sleep and wakefulness--sometimes you feel like you're falling and will jerk your legs to stop yourself? That's the simplest explanation; however, hypnagogia can evolve into hallucinations (auditory and visual). As I am falling asleep, I jolt up because I am in danger. I may think I'm back with my ex-husband, or I've seen gruesome things that scare the hell out of me. I have been involved with therapists and shrinks for 22 years. I am not bi-polar, BP, schizophrenic, or psychotic. It's all been ruled out. With the hypnagogia came insomnia. Before May 11, I went to sleep around 4 a.m. and woke up at 1 p.m.
It's bloody light outside and I can hear the birds. Every day since May 11, I have experienced episodic DPDR. I video chatted with both my therapists, GP, and shrink. They all agree it's DPDR. I started EMDR in the last year and in April my EMDR therapist was having me deal with the beginning of my relationship with my ex-husband. I didn't know that I wasn't supposed to "remember" or "go back" with all five senses. My EMDR therapist thinks I re-traumatized myself but also believes that the decade anniversary of my divorce and one-year anniversary of my little kitty getting sick and dying last August has brought all this on.
I work from home as a freelance editor. But, I can't work with DPDR. My brain is foggy and my short-term memory is shot. Even when I come out of a DPDR episode, I still don't have the mental acumen I used to have. I totally forget what I am talking about mid-sentence. My DPDR starts around 3 p.m. every day and "ends" between 8 and 11 p.m. So I am sleeping during the hours when I am actually in my body and not afraid. I know people suffer from DPDR chronically for weeks, months, and years. I am blessed to have it episodically, but I can't "live" normally. There is no way I will leave the house. I can't edit properly because my brain doesn't work. I've been blessed with my intellect--but my brain fails me now. I mistype, misspeak, and can't focus. All that I have gone through---I've always had my brain. I can't depend on that now.
I am so overwhelmed. I'm sorry I'm rambling. Sleeping pills don't work. I tried them all. Literally. I dread each day because an hour or so after I wake up I derealize and then depersonalize. Around 4 or 5 p.m., the DPDR gets really bad. It's like I am not tethered to reality. I can't grasp my sense of self...that is the best way to describe it. I am terrified for this hour. I "go away." A voice in my head (not an auditory hallucination or external voice) tells me to lay my head down and not engage. Usually, this happens when I am talking about something that is upsetting to me. It sounds so bloody cliche. I "go away" when I talk about the past. My brain just is closed. Sometimes I have flashbacks and other times I feel like I am high. My head is floaty. My voice is sedated. I have combed the internet for information and there is very little. I am only the second person my shrink has ever seen who has this disorder. Time stretches on for hours when I am in DPDR. I feel like I am high, but not in a good way. Yes, I use medical marijuana to sleep and for my panic attacks, which are full-body seizures at their worst. I could count on my two hands how many times I did pot as a teenager and in college. But, it changed my life with its ability to quell my panic attacks and give me a break from my constant, relentless, cruel inner monologue.
I know that marijuana can lead to DPDR; however, I am 44 and I have been vaping medical marijuana for three and a half years now. If I don't vape marijuana, the hypnagogia is untenable. Please, I'm sorry, I just don't want to hear that marijuana is causing this problem. It's not. Not in my case. I am very in tune with my body. I never reacted badly to vaping--I am a silly, happy, person with medical marijuana. I also use a lot of medical-grade CBD. So much of what I find online is young adults talking about how they can live with DPDR--they can function. I cannot. I can't talk or think correctly. I am terrified. Even though I know it's all "not real," it sure feels that way. My eyes see my keyboard and my brain is telling me that it's not a keyboard--it's not right,..there is something wrong. It's not real. My voice is not my own.
How do I deal? I have a workbook, I do art therapy and grounding techniques, but I could not be cognizant to even fake normality when I am in any stage of DPDR. I literally feel like I am losing my mind. Every day, four to eight hours are spent in DPDR. Wasted time. This is not a way to live. What can I do? How do I cope? How do I sleep and face each day filled with hours of terror? I lived like that for so long with my ex-husband. That experience, plus growing up in a domestically abusive household, brought me to a suicide attempt in 2014.
I have this incredible husband and I just want to live in the present with him. He is 25 years my senior. So, he's 69. He is a professional musician, but COVID hit the entertainment business with a vengeance. He is so good to me, but he took care of his first wife 24/7 for almost ten years because she had progressive, aggressive MS. He should not have to suffer this again. I have my Faith, but I am angry as hell with God. I never asked "why me" until my mother had breast cancer (cancer-free, thanks be to God and good doctors) when my little kitty lost one and then the other eye and her jaw locked shut. I spoon-fed her until the end. And, now. I am asking "why me?"
I feel so desperate and in such despair...any advice would be helpful. I know I write that, but previously I said I don't want to hear how marijuana is causing DPDR. It's about trauma for me. Unresolved trauma and living in a necessary fight-or-flight response for almost seven years. ECT. Counseling. EMDR. Help...I feel like my life as I knew it is over.