How did you find yourself after a traumatic experience?
July 25, 2020 12:44 AM Subscribe
Have you ever lost your identity? How did you recover it or rediscover who you are?
Hi all.
I'm looking for answers. Here's the context:
I grew up in an upper-middle class Jewish family. My father was physically and mentally abusive, and my mother was pretty absent. They divorced when I was 9. I was always sociable with everyone in my school, my never got too close to anyone. I was friends with everyone; jocks, nerd, the gamut. I studied hard and worked hard in school because I wanted to get away from home. Far, far, away. It worked and I got into an Ivy League and studied Math and Computer Science (this was about 15 years ago, when I-banking was still cool).
After college, I moved out to the West Coast and married an amazing woman who I met at college. A few years later, we found that we had a genetic incompatibility and both had an autosomal recessive disorder, and our first try at having kids failed. My wife then put herself through IVF for 2 years and 6 years later we have a beautiful boy.
He was a terrible sleeper in his first two years, so during that time, my wife and I both suffered from chronic sleep deprivation. I also got sick with HFM (2x) and the Flu during that period. Despite this, I spent a year (2017) doing triathlons and working out to try my best to keep my body in good shape.
In early 2018, I got infected with a virus (still unsure what it was, but signs point to Epstein-Barr), and I never really got better. When I was sick, I was unable to do much of anything—I was just too tired. By 10-11am, every day, I would crash and have to sleep. Mental work was completely off the table.
I saw tons of doctors and no one knew was to do. I had to shut down my consulting business and many friendships were lost. I just had no energy to go out to dinner, or drink, or travel. It was not a good time.
I was referred to neurology, endocrinology, infection diseases, ENTs, etc. I got a sleep study but was negative for OSA. My PCP started dosing me with a cocktail of Setraline and Wellbutrin but it didn't really help at all.
At one point, about 1.5 years in, my PCP decided to test my T levels and they were very low (105 ng/dL) and I was referred to a Urologist for T injections. I felt the best that I had in a long time after that first shot, but I didn't understand why I had low testosterone. After a month of injections, I asked my PCP to give me another sleep study. It was positive for OSA. I was given an APAP and now use it every day. My PCP took me off the SSRI but after 6 months of the APAP and little improvement to my feelings of fatigue, I was given Duloxetine and slowly moved up to a 90mg daily dose.
I'm still feeling pretty tired but I'm doing what I can, maybe this is just how life is supposed to feel like? I see three therapists and no progress that I can tell has been made. I have a job now that I like but I feel like I'm on a hamster wheel. My identity is shattered and I no longer feel much affinity towards the things I used to love doing, like working hard, shipping products, etc. I just don't have the energy, so I feel like I need to get used to this new self.
In short, I feel like my "self" that existed prior to 2018 is gone. I don't really know who I am anymore.
Have others here had identity crises like this? What did you do? How have things changed since then?
Hi all.
I'm looking for answers. Here's the context:
I grew up in an upper-middle class Jewish family. My father was physically and mentally abusive, and my mother was pretty absent. They divorced when I was 9. I was always sociable with everyone in my school, my never got too close to anyone. I was friends with everyone; jocks, nerd, the gamut. I studied hard and worked hard in school because I wanted to get away from home. Far, far, away. It worked and I got into an Ivy League and studied Math and Computer Science (this was about 15 years ago, when I-banking was still cool).
After college, I moved out to the West Coast and married an amazing woman who I met at college. A few years later, we found that we had a genetic incompatibility and both had an autosomal recessive disorder, and our first try at having kids failed. My wife then put herself through IVF for 2 years and 6 years later we have a beautiful boy.
He was a terrible sleeper in his first two years, so during that time, my wife and I both suffered from chronic sleep deprivation. I also got sick with HFM (2x) and the Flu during that period. Despite this, I spent a year (2017) doing triathlons and working out to try my best to keep my body in good shape.
In early 2018, I got infected with a virus (still unsure what it was, but signs point to Epstein-Barr), and I never really got better. When I was sick, I was unable to do much of anything—I was just too tired. By 10-11am, every day, I would crash and have to sleep. Mental work was completely off the table.
I saw tons of doctors and no one knew was to do. I had to shut down my consulting business and many friendships were lost. I just had no energy to go out to dinner, or drink, or travel. It was not a good time.
I was referred to neurology, endocrinology, infection diseases, ENTs, etc. I got a sleep study but was negative for OSA. My PCP started dosing me with a cocktail of Setraline and Wellbutrin but it didn't really help at all.
At one point, about 1.5 years in, my PCP decided to test my T levels and they were very low (105 ng/dL) and I was referred to a Urologist for T injections. I felt the best that I had in a long time after that first shot, but I didn't understand why I had low testosterone. After a month of injections, I asked my PCP to give me another sleep study. It was positive for OSA. I was given an APAP and now use it every day. My PCP took me off the SSRI but after 6 months of the APAP and little improvement to my feelings of fatigue, I was given Duloxetine and slowly moved up to a 90mg daily dose.
I'm still feeling pretty tired but I'm doing what I can, maybe this is just how life is supposed to feel like? I see three therapists and no progress that I can tell has been made. I have a job now that I like but I feel like I'm on a hamster wheel. My identity is shattered and I no longer feel much affinity towards the things I used to love doing, like working hard, shipping products, etc. I just don't have the energy, so I feel like I need to get used to this new self.
In short, I feel like my "self" that existed prior to 2018 is gone. I don't really know who I am anymore.
Have others here had identity crises like this? What did you do? How have things changed since then?
Autoimmune problems are hard to detect (and often hard to treat, frankly), but that would link up with your chronic fatigue and brain fog.
I agree that a med change is in order. Now there is a genetic test that can show your doctor which antidepressants are likely to work the best for you. It doesn't sound like you are on anything specifically for anxiety (well, the sertraline does both); would it help to ask after that. Some people add Abilify or Rexulti to antidepressants to make them work better, but that's all between you and your doctor.
Definitely a therapist. And I would also suggest EMDR, which is a trauma therapy rooted in eye movements. It helps you re-process traumas, phobias, etc (bonus--it can help with trauma that leads to autoimmune problems), and it doesn't involve any medications. It's very effective for trauma; I've done it a couple times.
As for the rest, yes, unfortunately, you just kind of have to go through it, and you celebrate your small, big milestones as you heal. At one time my PTSD was so bad I couldn't get on a public bus. And then one day it was like "oh, I need to go to the art store. I'll take the bus." Things like that.
I hope you find yourself again.
posted by mermaidcafe at 7:45 AM on July 25, 2020 [5 favorites]
I agree that a med change is in order. Now there is a genetic test that can show your doctor which antidepressants are likely to work the best for you. It doesn't sound like you are on anything specifically for anxiety (well, the sertraline does both); would it help to ask after that. Some people add Abilify or Rexulti to antidepressants to make them work better, but that's all between you and your doctor.
Definitely a therapist. And I would also suggest EMDR, which is a trauma therapy rooted in eye movements. It helps you re-process traumas, phobias, etc (bonus--it can help with trauma that leads to autoimmune problems), and it doesn't involve any medications. It's very effective for trauma; I've done it a couple times.
As for the rest, yes, unfortunately, you just kind of have to go through it, and you celebrate your small, big milestones as you heal. At one time my PTSD was so bad I couldn't get on a public bus. And then one day it was like "oh, I need to go to the art store. I'll take the bus." Things like that.
I hope you find yourself again.
posted by mermaidcafe at 7:45 AM on July 25, 2020 [5 favorites]
I'd suggest an integrative medicine specialist as well as a psychiatrist, therapist, and change of meds. It does also sound like some kind of complex autoimmune issue, though I'm not a doctor and don't have anything more specific to offer.
It's hard dealing with disability, and the reordering of priorities and figuring out what's important to you. I do suggest reaching out to the people that you're close with or want to become close with again and explaining what happened and that you do want to be friends - the cool ones will come back, and people in your community may be able to help you find good providers or help out with the things you can't do yourself.
Good luck.
posted by bile and syntax at 9:14 AM on July 25, 2020
It's hard dealing with disability, and the reordering of priorities and figuring out what's important to you. I do suggest reaching out to the people that you're close with or want to become close with again and explaining what happened and that you do want to be friends - the cool ones will come back, and people in your community may be able to help you find good providers or help out with the things you can't do yourself.
Good luck.
posted by bile and syntax at 9:14 AM on July 25, 2020
Yeah I had a major mental breakdown in 2013 that was a results of CPTSD, workplace stress/bullying, familial + domestic partner emotional abuse, identity issues and an unchecked eating/hormone disorder. I also felt completely lost and without a sense of self. It took a long time (maybe close to 7 years) and a lot of therapy but I’m back to feeling like my “old self” and I’ve grown into a solid identity as well. It takes time and it takes a lot of self-care and professional help but your brain will heal eventually.
Edit: Also I microdosed shrooms for close to 5 years.
posted by Young Kullervo at 12:11 PM on July 25, 2020 [2 favorites]
Edit: Also I microdosed shrooms for close to 5 years.
posted by Young Kullervo at 12:11 PM on July 25, 2020 [2 favorites]
I've had anemia problems that have left me feeling very fatigued and wondering why I felt rotten. First was iron and then Vitamin D. Fixed those with supplements, which I still take. Then, five years ago, I felt tired easily, dizzy, etc and I guess because I didn't gain weight, I wasn't tested for hypothyroidism. Two years of feeling off til a doctor tested me for it. I am on thyroid medicine now. The mental challenges are real; don't let anyone dismiss them. I think we have different identities over a lifetime. Mine's different now that I'm past middle age, for example. I recommend a nutritionist, a threat and an integrative care doctor. Good luck to you.
posted by DixieBaby at 3:30 PM on July 25, 2020 [2 favorites]
posted by DixieBaby at 3:30 PM on July 25, 2020 [2 favorites]
my PCP decided to test my T levels and they were very low (105 ng/dL) and I was referred to a Urologist for T injections. I felt the best that I had in a long time after that first shot, but I didn't understand why I had low testosterone
Are you still monitoring your hormone levels and continuing to see a specialist? If this is the only treatment that has had a positive effect, and the only objective test that revealed a clear-cut abnormal result, I am confused about why it seems like your doctors just dropped it & didn't investigate possible causes/correlations other than the ones you came in knowing about. Is it because because your levels came up but the positive effect didn't last, or because it's not safe for you to continue hormone therapy?
You said you were seeing (or had seen?) three therapists, and several people have nevertheless recommended therapy as if it were a new idea. so I apologize if you did explain the answers to my above questions already, and I just missed them.
you should definitely have a psychiatrist in charge of your mental health medications at this point, not a PCP. you have tried a couple of standard depression treatments, and you need an expert for any future medication changes, combinations, or experimental off-label uses that may occur to them.
see also if you are a person who gets any benefit out of exercise for chronic fatigue. you won't know if it works unless/until you are able to sustain it for a few weeks consistently, but some people who are this badly off can't do that.
posted by queenofbithynia at 4:22 PM on July 25, 2020
Are you still monitoring your hormone levels and continuing to see a specialist? If this is the only treatment that has had a positive effect, and the only objective test that revealed a clear-cut abnormal result, I am confused about why it seems like your doctors just dropped it & didn't investigate possible causes/correlations other than the ones you came in knowing about. Is it because because your levels came up but the positive effect didn't last, or because it's not safe for you to continue hormone therapy?
You said you were seeing (or had seen?) three therapists, and several people have nevertheless recommended therapy as if it were a new idea. so I apologize if you did explain the answers to my above questions already, and I just missed them.
you should definitely have a psychiatrist in charge of your mental health medications at this point, not a PCP. you have tried a couple of standard depression treatments, and you need an expert for any future medication changes, combinations, or experimental off-label uses that may occur to them.
see also if you are a person who gets any benefit out of exercise for chronic fatigue. you won't know if it works unless/until you are able to sustain it for a few weeks consistently, but some people who are this badly off can't do that.
posted by queenofbithynia at 4:22 PM on July 25, 2020
I meant a therapist not a threat in my answer. Darn autospell!
posted by DixieBaby at 5:22 PM on July 25, 2020
posted by DixieBaby at 5:22 PM on July 25, 2020
I can relate to a lot of this. So I'll share some of my own experience and hope it saves you some time and hassle. IANAD, IANYD. I've used a CPAP for OSA for about 2 years. It clearly made an improvement but for most of that time I continued to struggle in the morning's with not waking refreshed, or feeling like I'd slept, and other challenges, even though the sleep Dr says the data from the machine indicates I'm sleeping well, not having many apneas, etc. I had been taking Duloxetine for many many years pre-CPAP. I found some articles about research suggesting SSRIs and SNRIs delay the onset, and the amount, of REM sleep. Went back to my original sleep study and sure enough, both are CLEARLY shown as having been measured. Did the "sleep Dr" know anything about this affect? Nope. Not his wheelhouse, LOL. Anyway, I slowly tapered down off the Duloxetine and am now off it. My mornings are less of a struggle, and you know what? For the first time in years, I can actually recall what I dreamed the night before. Seriously, for years, I'd wake up with a vague notion of dreaming (as I was waking up at the height of a much-delayed REM cycle) but after a few seconds I had no recall. Now, though, post-duloxetine-stoppage: throughout the day I randomly remember details dreams. Like it was, many years ago.
Can't stress strongly enough how important it is to NOT stop duloxetine cold-turkey. Trust me, it's a nightmare. My final taper-off was over the course of months. Probably overkill, according to my psychiatrist, but I had been on it for 10+ years, so seemed warranted. YMMV.
I can also relate to some of your experience with Low T. Yes, they fluctuate, and Dr's seem to think that even if they have previous tests indicating a problem, if the LATEST test shows a normal level, then there must not be any problem worth treating. Anyway, there are some simple tests an endocrinologist can order (and maybe even your PCP) to find out if it's primary hypogonadism, or secondary hypogonadism due to a pituitary problem. From what I recall, that second one is fairly easy to treat. Also look into dietary factors. There are plenty of foods out there that are thought to decrease T and/or increase estrogen. One, for me, was hoppy beer. There are others . Flax seed. Licorice. Mint. Is your blood glucose being monitored? High BG can affect T production. Link.
Stress is known to affect hormone levels that dampen T.
I'm sorry you are struggling. What you've written is so relatable, bouncing from one Dr or avenue of inquiry, to another. It's not your fault. Lack of deep, effective, quality care for systemic health issues is perhaps a feature not a bug of the modern western medical system. I had a heart attack last year and the care I got was fantastic and effective. But the years of fatigue, pain, struggle prior to that, which likely caused the factors that directly caused the blockage in my heart ? Craps shoot after craps shoot. Ain't no money in it. Not like a nice stent insertion. Keep searching. Keep shopping. Be ruthless with your Drs. Follow your gut. Keep fighting. Don't let the bastards drag you down.
And if anyone recommends Remeron/Mirtazapine: RUN.
Feel free to memail me.
posted by armoir from antproof case at 8:58 PM on July 25, 2020 [3 favorites]
Can't stress strongly enough how important it is to NOT stop duloxetine cold-turkey. Trust me, it's a nightmare. My final taper-off was over the course of months. Probably overkill, according to my psychiatrist, but I had been on it for 10+ years, so seemed warranted. YMMV.
I can also relate to some of your experience with Low T. Yes, they fluctuate, and Dr's seem to think that even if they have previous tests indicating a problem, if the LATEST test shows a normal level, then there must not be any problem worth treating. Anyway, there are some simple tests an endocrinologist can order (and maybe even your PCP) to find out if it's primary hypogonadism, or secondary hypogonadism due to a pituitary problem. From what I recall, that second one is fairly easy to treat. Also look into dietary factors. There are plenty of foods out there that are thought to decrease T and/or increase estrogen. One, for me, was hoppy beer. There are others . Flax seed. Licorice. Mint. Is your blood glucose being monitored? High BG can affect T production. Link.
Stress is known to affect hormone levels that dampen T.
I'm sorry you are struggling. What you've written is so relatable, bouncing from one Dr or avenue of inquiry, to another. It's not your fault. Lack of deep, effective, quality care for systemic health issues is perhaps a feature not a bug of the modern western medical system. I had a heart attack last year and the care I got was fantastic and effective. But the years of fatigue, pain, struggle prior to that, which likely caused the factors that directly caused the blockage in my heart ? Craps shoot after craps shoot. Ain't no money in it. Not like a nice stent insertion. Keep searching. Keep shopping. Be ruthless with your Drs. Follow your gut. Keep fighting. Don't let the bastards drag you down.
And if anyone recommends Remeron/Mirtazapine: RUN.
Feel free to memail me.
posted by armoir from antproof case at 8:58 PM on July 25, 2020 [3 favorites]
If you could only work for an hour a day, what would be the most effective use of your time everyday?
posted by parmanparman at 9:52 AM on July 26, 2020
posted by parmanparman at 9:52 AM on July 26, 2020
Please please please see if your Epstein-Barr levels are still elevated. This sounds like my dad and it took multiple years to get diagnosed with chronic Epstein-Barr virus.
posted by whitetigereyes at 7:15 AM on July 27, 2020 [1 favorite]
posted by whitetigereyes at 7:15 AM on July 27, 2020 [1 favorite]
This thread is closed to new comments.
Good luck
posted by Amy93 at 6:39 AM on July 25, 2020 [1 favorite]