What, If Anything, Is Going On With Me?
August 17, 2024 12:11 AM Subscribe
I have long thought that I might have some undiagnosed neurological/psychological issues that have made my life very difficult, and I don’t have access to the kind of services that would help me get professionally assessed. You are not my neurologist or mental health care professional, but maybe you have lived experience and/or professional qualifications that will make it possible for you to see a recognizable profile in my description of how I tick, and/or to offer some useful suggestions or insights.
Here are what I believe may constitute my "symptoms":
Over twenty-five years ago, in my early twenties, I had both a regular and a sleep-deprived EEG done in an effort to find a cause for my history of fainting. Both tests found non-specific abnormalities in my brain, meaning the abnormalities didn’t follow any recognizable/diagnosable pattern. I had an MRI done at that time too, but it was normal. My neurologist was never able to find out why I was fainting. I don't faint that often, and usually when I do, there's an obvious cause, such as me having the flu, or I've been out in the sun on a hot day, or I forgot to eat, etc. I don't consider it a serious problem, but I thought I should mention it.
I have had a huge problem with rumination as far back as I can remember. I keep thinking back over shitty past experiences that usually involve abuse of some kind, and both reliving and rewriting them. I grew up with physical and emotional abuse, and had a number of emotionally abusive friendships and romantic relationships as a teen and a young woman because I didn’t have healthy boundaries, and I often find myself becoming very worked up over some of those painful memories, both at the person for treating me the way they did and at myself for not having the sense and the self-respect to protect myself. I have learned to control it somewhat and have a little mental routine that works whenever I remember to do it, but keeping myself from ruminating is a constant battle.
I have also always daydreamed and fantasized a lot, and I have had a lifelong tendency to retreat into daydreams when what I’m doing is too boring or life is too painful, which had a negative impact on first my school and then work performance, and has also meant that I’ve spent a lot of time wallowing in escapist fantasies instead of putting in the work required to solve problems or to actually do the things I dream about doing. I’ve gotten better at controlling it over the years, and I wouldn’t say it’s a problem now exactly, as daydreaming is something I enjoy a lot and I’ve also been able to put it to practical use in say, writing fiction, or getting useful ideas for things I want to do.
I am a very irritable person and have an extremely low tolerance for frustration. I’ve made quite a lot of progress in learning to deal with both my irritability and frustration over the years and can keep myself from acting out on my frustration when around other people at least, but frustration of any kind (i.e., my old computer freezes up, I spill something on the floor) still tends to make me really angry and send me into a rumination spiral.
I had a lot of trouble with emotional regulation in my young days, and would cry and lose my temper very easily. I almost never cry now, even in private, and I can keep my temper when around other people. I still get overwhelmed and flustered very easily, and I also get discouraged easily. I’ve always been a terrible procrastinator, because the things I need or want to do often seem too hard or too overwhelming to undertake. I don’t believe that I’ve ever been clinically depressed, but I struggled a lot with situational depression from the age of eleven to the age of 40 or so. I wouldn’t say depression is really an issue with me anymore.
I had some trouble with organization and planning realistically when I was young, but I’ve overcome that as well. I have been basically compulsively tidy since I was quite young, and have something of a fetish for organizing and planning.
I’m what I would describe as a borderline compulsive overeater. I’ve learned to control that fairly well under normal circumstances, but stress tends to send me into a tailspin. In January of 2023 I was physically assaulted by my tenant, I gained 30 pounds over the next year, and I have only recently been able to begin to eat sensibly again and to start working on getting my weight down.
I’ve had chronic fatigue issues for the last seventeen years, and it just isn’t getting better. My best times are usually in the morning (except on those days when I wake up feeling like garbage), but while I can do three or four hours of work, as the day wears on I lose the ability to focus or make myself do anything useful, even when I still feel physically capable of doing at least some more work.
All of these issues combined have made it very difficult for me to get much done day to day, which in turn has made my life a slow-moving trainwreck. I've taken various online tests for autism and ADHD. Based on those test scores, I don't believe I'm on the autism spectrum, though I think I might have ADHD, but again, I can't afford to have myself assessed for that. I'll just say here that my mother, a career elementary schoolteacher, has said to me a number of times that I "was hell to raise" because I was "very creative and sensitive and high-strung" with "the highest I.Q. in my elementary school class" and "kids like that are hard to raise".
Perhaps there's nothing definitively wrong with me, and as I've said I have basically grown out of a lot of my former issues, but it just feels like it shouldn’t be so hard to keep myself mentally and emotionally on track, and to make myself do a reasonable day’s work.
Does any of this add up to a recognizable pattern to any of you?
Here are what I believe may constitute my "symptoms":
Over twenty-five years ago, in my early twenties, I had both a regular and a sleep-deprived EEG done in an effort to find a cause for my history of fainting. Both tests found non-specific abnormalities in my brain, meaning the abnormalities didn’t follow any recognizable/diagnosable pattern. I had an MRI done at that time too, but it was normal. My neurologist was never able to find out why I was fainting. I don't faint that often, and usually when I do, there's an obvious cause, such as me having the flu, or I've been out in the sun on a hot day, or I forgot to eat, etc. I don't consider it a serious problem, but I thought I should mention it.
I have had a huge problem with rumination as far back as I can remember. I keep thinking back over shitty past experiences that usually involve abuse of some kind, and both reliving and rewriting them. I grew up with physical and emotional abuse, and had a number of emotionally abusive friendships and romantic relationships as a teen and a young woman because I didn’t have healthy boundaries, and I often find myself becoming very worked up over some of those painful memories, both at the person for treating me the way they did and at myself for not having the sense and the self-respect to protect myself. I have learned to control it somewhat and have a little mental routine that works whenever I remember to do it, but keeping myself from ruminating is a constant battle.
I have also always daydreamed and fantasized a lot, and I have had a lifelong tendency to retreat into daydreams when what I’m doing is too boring or life is too painful, which had a negative impact on first my school and then work performance, and has also meant that I’ve spent a lot of time wallowing in escapist fantasies instead of putting in the work required to solve problems or to actually do the things I dream about doing. I’ve gotten better at controlling it over the years, and I wouldn’t say it’s a problem now exactly, as daydreaming is something I enjoy a lot and I’ve also been able to put it to practical use in say, writing fiction, or getting useful ideas for things I want to do.
I am a very irritable person and have an extremely low tolerance for frustration. I’ve made quite a lot of progress in learning to deal with both my irritability and frustration over the years and can keep myself from acting out on my frustration when around other people at least, but frustration of any kind (i.e., my old computer freezes up, I spill something on the floor) still tends to make me really angry and send me into a rumination spiral.
I had a lot of trouble with emotional regulation in my young days, and would cry and lose my temper very easily. I almost never cry now, even in private, and I can keep my temper when around other people. I still get overwhelmed and flustered very easily, and I also get discouraged easily. I’ve always been a terrible procrastinator, because the things I need or want to do often seem too hard or too overwhelming to undertake. I don’t believe that I’ve ever been clinically depressed, but I struggled a lot with situational depression from the age of eleven to the age of 40 or so. I wouldn’t say depression is really an issue with me anymore.
I had some trouble with organization and planning realistically when I was young, but I’ve overcome that as well. I have been basically compulsively tidy since I was quite young, and have something of a fetish for organizing and planning.
I’m what I would describe as a borderline compulsive overeater. I’ve learned to control that fairly well under normal circumstances, but stress tends to send me into a tailspin. In January of 2023 I was physically assaulted by my tenant, I gained 30 pounds over the next year, and I have only recently been able to begin to eat sensibly again and to start working on getting my weight down.
I’ve had chronic fatigue issues for the last seventeen years, and it just isn’t getting better. My best times are usually in the morning (except on those days when I wake up feeling like garbage), but while I can do three or four hours of work, as the day wears on I lose the ability to focus or make myself do anything useful, even when I still feel physically capable of doing at least some more work.
All of these issues combined have made it very difficult for me to get much done day to day, which in turn has made my life a slow-moving trainwreck. I've taken various online tests for autism and ADHD. Based on those test scores, I don't believe I'm on the autism spectrum, though I think I might have ADHD, but again, I can't afford to have myself assessed for that. I'll just say here that my mother, a career elementary schoolteacher, has said to me a number of times that I "was hell to raise" because I was "very creative and sensitive and high-strung" with "the highest I.Q. in my elementary school class" and "kids like that are hard to raise".
Perhaps there's nothing definitively wrong with me, and as I've said I have basically grown out of a lot of my former issues, but it just feels like it shouldn’t be so hard to keep myself mentally and emotionally on track, and to make myself do a reasonable day’s work.
Does any of this add up to a recognizable pattern to any of you?
Much of this is basically just describing CPTSD. Fortunately (or, unfortunately, really) CPTSD is common enough that there's a lot of resources on how to approach it, though that doesn't make it any easier to deal with; healing is, at best, a lifelong journey (though one worth taking).
If you're looking for a more in-depth resource on the topic, I might suggest something like the book "Complex PTSD: From Surviving to Thriving".
posted by etealuear_crushue at 2:17 AM on August 17 [7 favorites]
If you're looking for a more in-depth resource on the topic, I might suggest something like the book "Complex PTSD: From Surviving to Thriving".
posted by etealuear_crushue at 2:17 AM on August 17 [7 favorites]
Seeking Safety is another book relating to CPTSD you may be interested in.
posted by sixswitch at 2:24 AM on August 17 [1 favorite]
posted by sixswitch at 2:24 AM on August 17 [1 favorite]
1. The NASA 10 Minute Lean Test, a DIY home test for POTS / orthostatic intolerance / possible dysautonomia.
a) You should have another person present for this test.
b) Preparation for the test begins 48 hours prior to test day (full details, including medications to temporarily restrict; if anything you take is listed, please get the prescribing doctor's approval, and/or consult your pharmacist). For "Do not wear compression socks or clothing on the day of the test," I'll add, I think it's helpful to skip wearing these items a full 24 hours before test day.
2. Keep an electrolyte drink in a travel mug or thermos on your nightstand, and drink it on "wake up feeling like garbage" mornings before you get out of bed. Try to increase your salt and fluids intake, particularly in the couple of hours before your energy level usually plummets.
3. If you don't wear compression socks or stockings, start. Put them on as early in your day as possible (like, while still abed), and take them off before going to sleep.
4. Read up on maladaptive daydreaming; this type of compulsive daydreaming / elaborate fantasizing can tie to ADHD, and serve as a coping mechanism for traumatized folks.
posted by Iris Gambol at 3:31 AM on August 17 [3 favorites]
a) You should have another person present for this test.
b) Preparation for the test begins 48 hours prior to test day (full details, including medications to temporarily restrict; if anything you take is listed, please get the prescribing doctor's approval, and/or consult your pharmacist). For "Do not wear compression socks or clothing on the day of the test," I'll add, I think it's helpful to skip wearing these items a full 24 hours before test day.
2. Keep an electrolyte drink in a travel mug or thermos on your nightstand, and drink it on "wake up feeling like garbage" mornings before you get out of bed. Try to increase your salt and fluids intake, particularly in the couple of hours before your energy level usually plummets.
3. If you don't wear compression socks or stockings, start. Put them on as early in your day as possible (like, while still abed), and take them off before going to sleep.
4. Read up on maladaptive daydreaming; this type of compulsive daydreaming / elaborate fantasizing can tie to ADHD, and serve as a coping mechanism for traumatized folks.
posted by Iris Gambol at 3:31 AM on August 17 [3 favorites]
I can't afford to have myself assessed
I don’t have access to the kind of services that would help me get professionally assessed
I'm an emergency physician. I work in a big-city "safety net" hospital that, by law, has to treat all individuals regardless of ability of pay. We serve a catchment of 900,000 people, and are the city's sole receiving hospital for all psychiatric patients. I see dozens of poor, mentally ill patients every week, and know just about everything about "working the system" to get whatever care they need
You actually have a lot of options, you're just not aware of them.
If you memail your location, or the name of the closest big city near you, I can tell you how and where to get free and/or low-cost neuropsychological screening, psychiatric assessment (for medication), and talk therapy.
posted by BadgerDoctor at 3:38 AM on August 17 [32 favorites]
I don’t have access to the kind of services that would help me get professionally assessed
I'm an emergency physician. I work in a big-city "safety net" hospital that, by law, has to treat all individuals regardless of ability of pay. We serve a catchment of 900,000 people, and are the city's sole receiving hospital for all psychiatric patients. I see dozens of poor, mentally ill patients every week, and know just about everything about "working the system" to get whatever care they need
You actually have a lot of options, you're just not aware of them.
If you memail your location, or the name of the closest big city near you, I can tell you how and where to get free and/or low-cost neuropsychological screening, psychiatric assessment (for medication), and talk therapy.
posted by BadgerDoctor at 3:38 AM on August 17 [32 favorites]
History of fainting + suspected ADHD definitely suggests that you should look into POTS and, if you are also hypermobile, EDS. There seems to be a correlation. (My wife has ADHD, recently got diagnosed with EDS, and has figured out that a lot of the shit she's dealt with that wasn't undiagnosed ADHD with sensory processing issues has been chronic pain and constant joint issues from the EDS, that she hadn't really been processing as pain because it's been lifelong.)
posted by restless_nomad at 5:09 AM on August 17 [4 favorites]
posted by restless_nomad at 5:09 AM on August 17 [4 favorites]
I'm autistic and I have had most of the manifestations you describe: ruminations, meltdowns, frequent daydreaming / fantasy, fatigue (autistic burnout), compulsive overeating as a "coping mechanism", plus the early signs of promise in childhood.
Not all online tests for autism are reliable, especially if you're a woman (you didn't mention your gender). The RAADS-R (Ritvo Autism Asperger Diagnostic Scale–Revised) test is designed specifically for those who '“escape diagnosis” due to a subclinical level presentation'. I've scored pretty high on that one.
FWIW I wasn't DXed till age 53. Nor did any mental health professional suggest that I might be autistic up to that time, and I saw tons of them over a period of decades.
posted by rabia.elizabeth at 5:12 AM on August 17 [2 favorites]
Not all online tests for autism are reliable, especially if you're a woman (you didn't mention your gender). The RAADS-R (Ritvo Autism Asperger Diagnostic Scale–Revised) test is designed specifically for those who '“escape diagnosis” due to a subclinical level presentation'. I've scored pretty high on that one.
FWIW I wasn't DXed till age 53. Nor did any mental health professional suggest that I might be autistic up to that time, and I saw tons of them over a period of decades.
posted by rabia.elizabeth at 5:12 AM on August 17 [2 favorites]
You sound a lot like me. Many people in my family are...I think we'd probably be diagnosed as autistic today but were not as children.
I'm always unsure just what was caused by intrinsic stuff and what was caused by bad experiences. It sounds like my bad experiences were not as bad as yours, since my family was not abusive, but protracted and severe bullying in other contexts caused me a lot of health and emotional problems over the years and has definitely marked me for life.
One thing that did help with the rumination was talk therapy with a good therapist. This really isn't what they seem to recommend anymore, and was not my therapist's usual modality but basically I just talked about all the stuff that had happened to me and how I felt about it two to three times a month for somewhere under three years and it really somehow flipped some switch and I didn't feel as much of a need to ruminate. Emotionally, I think, some part of my brain felt that I was really, truly "heard" in a way that it did not when family or friends listened. Now I can still ruminate at times but not nearly so much and I can usually stop.
I don't know if that's something you've tried or if it would help, but your description of your symptoms sounds so much like mine that I wanted to mention it.
posted by Frowner at 5:56 AM on August 17 [2 favorites]
I'm always unsure just what was caused by intrinsic stuff and what was caused by bad experiences. It sounds like my bad experiences were not as bad as yours, since my family was not abusive, but protracted and severe bullying in other contexts caused me a lot of health and emotional problems over the years and has definitely marked me for life.
One thing that did help with the rumination was talk therapy with a good therapist. This really isn't what they seem to recommend anymore, and was not my therapist's usual modality but basically I just talked about all the stuff that had happened to me and how I felt about it two to three times a month for somewhere under three years and it really somehow flipped some switch and I didn't feel as much of a need to ruminate. Emotionally, I think, some part of my brain felt that I was really, truly "heard" in a way that it did not when family or friends listened. Now I can still ruminate at times but not nearly so much and I can usually stop.
I don't know if that's something you've tried or if it would help, but your description of your symptoms sounds so much like mine that I wanted to mention it.
posted by Frowner at 5:56 AM on August 17 [2 favorites]
I can't speak to the neurological/emotional issues but I had a history of fainting and lightheadedness for years and it turned out to be a vitamin B12 deficiency, for which I now take monthly injections which I can administer myself at home. (Oral vitamins don't work as my body doesn't absorb it properly). Depending on your location there is probably some sort of clinic or public health service for people without insurance or resources who could do a blood test for you. The actual injection treatment is quite cheap. Just thought I'd share on the off chance this is related to your fainting.
posted by emd3737 at 6:31 AM on August 17
posted by emd3737 at 6:31 AM on August 17
Mod note: FYI, rabia.elizabeth, the link in your comment doesn't go anywhere. Let us know what the link is and we can edit that part of your comment.
posted by Brandon Blatcher (staff) at 6:43 AM on August 17
posted by Brandon Blatcher (staff) at 6:43 AM on August 17
You can have CPTSD and ADHD. I have a strong family history of ADHD but only got diagnosed myself in the last year because I was attributing all my difficulties to trauma or, like you, the assumption that "former gifted kids are just like that." Your symptoms sound very similar to mine.
If it helps, my understanding is that you do not need a full neuropsychological workup for an ADHD diagnosis. I was diagnosed by a psych NP over 2 appointments (interview plus computerized test). Some people even get diagnosed by their PCP. My coping mechanisms are decent, but the diagnosis/access to treatment has been incredibly helpful.
posted by toastedcheese at 7:06 AM on August 17
If it helps, my understanding is that you do not need a full neuropsychological workup for an ADHD diagnosis. I was diagnosed by a psych NP over 2 appointments (interview plus computerized test). Some people even get diagnosed by their PCP. My coping mechanisms are decent, but the diagnosis/access to treatment has been incredibly helpful.
posted by toastedcheese at 7:06 AM on August 17
Came here to mention CPTSD as well.
The fainting, if they don't see a physical abnormality, is likely vasovagal syncope. We don't have full evidentiary answers for this, but it does seem like people who have a history of trauma are especially good at clenching up in all the ways that trigger your vagus nerve.
I always anti-recommend The Body Keeps The Score as the author and some of the science is sketch, and much more recommend Complex PTSD: From Surviving to Thriving as a starting point. The emphasis there is strongly on Adverse Childhood Experiences, mostly related to abuse or situations of externally-driven instability.
The science on all spectrum conditions is kinda shit, and I suspect that 10 years from now what we currently talk about as Autism or ADHD or similar will be defined in completely different ways, but there is certainly a line of thinking currently that trauma or a history of trauma becomes a form of neurodivergence, and if the systems and methodologies for functioning with ADHD work for you, you do not need a diagnosis. Everyone is welcome to use those techniques if they are helpful.
posted by Lyn Never at 7:27 AM on August 17 [4 favorites]
The fainting, if they don't see a physical abnormality, is likely vasovagal syncope. We don't have full evidentiary answers for this, but it does seem like people who have a history of trauma are especially good at clenching up in all the ways that trigger your vagus nerve.
I always anti-recommend The Body Keeps The Score as the author and some of the science is sketch, and much more recommend Complex PTSD: From Surviving to Thriving as a starting point. The emphasis there is strongly on Adverse Childhood Experiences, mostly related to abuse or situations of externally-driven instability.
The science on all spectrum conditions is kinda shit, and I suspect that 10 years from now what we currently talk about as Autism or ADHD or similar will be defined in completely different ways, but there is certainly a line of thinking currently that trauma or a history of trauma becomes a form of neurodivergence, and if the systems and methodologies for functioning with ADHD work for you, you do not need a diagnosis. Everyone is welcome to use those techniques if they are helpful.
posted by Lyn Never at 7:27 AM on August 17 [4 favorites]
First, please recognize and appreciate the tremendous work you've done to adapt to and cope with these difficulties. You have a strong understanding of the specific traits that cause trouble for you. It's a ton of work.
I am not a psychologist but I have some similar issues. Emotional intensity and depression are typically associated with Borderline Personality Disorder, which is kind of a creepy diagnosis that I do not think is useful. It's possible that Bipolar Disorder is more of a spectrum, and that might fit.
Not a doctor either, but I hope you had a heart checkup because fainting can be due to some heart issues.
The more you experience significant depression, the more neural pathways leading to depression you develop. Medication can be a big help, and there are different medications if one is not optimal. I changed meds a year ago and my depression is much better, though with some side effects. I can't take ADHD meds because of a heart condition, but I take a small does of thyroid medication and it helps a little. Some (most?) ADHD meds are speed and help with fatigue.
When you have chronic fatigue and depression, the fatigue is often attributed to the depression, with no further treatment. Many depression meds help a little, but I wish there were more research and treatment for the fatigue of depression; it can be debilitating. Summer helps me, and I force myself to exercise, because even though I often experience post-exercise malaise, it does help over the long run. Music helps, my dog is a big help.
Do what you can to see a doctor and get the help you deserve and need. Credit yourself for managing your symptoms really well. I with you the best
posted by theora55 at 7:35 AM on August 17
I am not a psychologist but I have some similar issues. Emotional intensity and depression are typically associated with Borderline Personality Disorder, which is kind of a creepy diagnosis that I do not think is useful. It's possible that Bipolar Disorder is more of a spectrum, and that might fit.
Not a doctor either, but I hope you had a heart checkup because fainting can be due to some heart issues.
The more you experience significant depression, the more neural pathways leading to depression you develop. Medication can be a big help, and there are different medications if one is not optimal. I changed meds a year ago and my depression is much better, though with some side effects. I can't take ADHD meds because of a heart condition, but I take a small does of thyroid medication and it helps a little. Some (most?) ADHD meds are speed and help with fatigue.
When you have chronic fatigue and depression, the fatigue is often attributed to the depression, with no further treatment. Many depression meds help a little, but I wish there were more research and treatment for the fatigue of depression; it can be debilitating. Summer helps me, and I force myself to exercise, because even though I often experience post-exercise malaise, it does help over the long run. Music helps, my dog is a big help.
Do what you can to see a doctor and get the help you deserve and need. Credit yourself for managing your symptoms really well. I with you the best
posted by theora55 at 7:35 AM on August 17
This sounds a lot like my kiddo who is gifted with ADHD. Minus the fainting.
posted by St. Peepsburg at 9:22 AM on August 17
posted by St. Peepsburg at 9:22 AM on August 17
Do you think you could be judging yourself too harshly? Rumination can do that for sure. I have fibro and often feel like I get nothing done , but when I step back, there’s
usually more than I thought.
posted by mermaidcafe at 6:11 AM on August 18
usually more than I thought.
posted by mermaidcafe at 6:11 AM on August 18
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For the fainting and extreme fatigue, what medical checks have you had? There's the basic, easy to rule out stuff like low blood pressure, POTS, thyroid issues, anemia, vitamin/mineral deficiency, heart issues, and so on, and then harder to diagnose things, such as autoimmune issues like cfs.
posted by trig at 2:06 AM on August 17 [2 favorites]