Regression caused by anesthesia? (study and my story)
I was really wondering why I'm not at all the same person anymore since I had Appendectomy with 14 general anesthesia. I was also born Inguinal hernia and was operated at 6 weeks of age, probably with adult's anesthetics, and it's been noted by my mother that I was a very nervous baby (afte the operation?!). And because I was so nervous, they gave me phenobarbital to calm me the f down, which is also one of those agents that is believed to cause havoc in the developing brain (apoptosis (cell death)). I also had central hypoperfusion at birth because of two loops of the umbilical cord around my neck. so basically screw me. It seems to me that everything in my life has come to a very painful halt.
I can't tell how the stuff as a baby affected me, but since the appendectomy, I'm just completely "off". I have what doctors call derealization. I personaly believe it's complete detachment, the autistic way. I am also unable to save biographical memories since then. I have many vivid memories to this day from the years before the operation, but everything after that is just a pile of confused and random memories without any order or emotions.
I believe I just have a case of regression. I am completely unable to do anything usefull beyond the very basic things, and I'm living in an agitated fog.
Do you think this is regression? anyone has experience with worsening of ASD after anestesia or operations?
Is there any quick fix for regression, if that's the case?
P.s.:
I also found this study which says people with both ASD and mitochondrial disease will be screwed pretty much by anesthesia:
Risk of Anesthesia Regression in Children with Autism Spectrum Disorder and Mitochondrial Dysfunction
potential damage to the brain, which is dependent on oxidative
metabolism. This risk is more pronounced during procedures
that require anesthesia. Because ASD children often undergo
medical procedures (like endoscopies, adenoidectomies,
tonsillectomies, and ear tube placement) requiring anesthesia,
regression with anesthesia is of particular concern for the subset
of children with ASD and mitochondrial dysfunction.
_________________
Male
Aspie score: 131 of 200
NT score: 34 of 200
Possibly Aspie (diagnosed by an autism expert, doc moves abroad, forced to change docs and all say it's schizophrenia NOS or schizo-affective disorde or personality disorders. initial doc was a colleague of uncle Simon btw. you do the math.). (edit: by Uncle Simon I mean Simon Baron Cohen. Just to clear things up.)
I remember discussing autobiographical memory with a clinical psychologist and coming to the conclusion that I essentially lack it, my memories are organized in a different way in part because I have a very weak sense of self. And I have a pretty weak working memory, but a strong long-term gestalt memory. I'm autistic and had my first general anesthesia before I was 10 years old for a tonsillectomy. I'll never forget it, the memories, sights and smells are very clear. I've had anesthesia for a septoplasty, two for extensive abdominal surgeries including appendectomy, and one for a hemithyroidectomy. A couple of those were with versed that blocks your memory of the procedure. I would get nervous and shaky after anesthesia, but I didn't note any increase in my autism symptoms. I had a head and brain injury when I was 3 1/2 years old that caused seizures for a few months, so I worry about re-triggering those. I did have one seizure a couple of years ago and one about 25 years ago. I've had bad vertigo on occasion too. My seizures as a child were treated with potassium bromide, rather than phenobarbital. I've read accounts of phenobarbitol producing considerable developmental problems in babies, although not cellular death. But it seems that the effects happen over time, rather than for just a short time.
I've had dissociation similar to derealization before, but in my case it was due to a severe case of PTSD.
Do you know if you have mitochondrial dysfunction or a methylation (such as MTHFR) defect? I tested negative for the C677T mutation, but wasn't tested for A1298C - have you been tested? I inject the cyanocobalamin for of B12 because of pernicious anemia. I've taken PQQ (Pyrroloquinoline quinone) before and I continue to take CoQ10 on the chance that my mitochondrial function is impaired. I wonder if hyperbaric oxygen therapy could help in your case due to the early hypoperfusion. I've had some health issues and some regression with my autism over the last few years with respect to sensory integration, although I've done well in other areas.
I have heterozygous C677T mutation, and they tell me the heterozygous version shouldn't causer any problem (as opposed to homozygous). my A1298C is negative.
I'm also suspected to have Fibromyalgia, and some docs believe fibro is in fact a mitochondrial disorder.>link to rather small study<. I'm right now experimenting with L-Carnitine and Coenzyme Q10. I am taking L-Carnitine since weeks but started Q10 3 days ago.
The Q10 seems to help but I'm not still sure whether it's placebo or actual effect from Q10.
Hyperbaric oxygen does actually help with fibro too (a study done in Israel says that). But the insurance situation in Germany is very weird. A treatment needs to be approved for the exact illness you have in order for me to get it. And Hyperbaric Oxygen therapy is not approved for fibro. And if I aim to pay it myself it's impossible because the prices are weirdly high (they make up phantasy prices for insurances and I have to pay the same price).
And in fact, the moment you ask them about paying privately, they start treating you like a crazy person who is asking for unnecessary treatment.
I've done a whole genome sequencing of my gemome (LOL) at this italian company which does such thing.
I think I can extract my Mitochondrial RNA along with my DNA from the raw files they send me on a usb stick (ridiculously large .bam file). I've done it like 70 days ago but the results aren't there yet.
Maybe that will shine a light on the stuff going on with me.
I mean I'm male and have both fibro and IIH (idiopathic intracranial pressure). According to statistics, only 60 male people in germany have IIH, because it's a womens disease almost exclusively. And fibro is also kind of exclusively a female person disease. This stuff doesn't add up. In fact, if someone is good at math, please calculate how likely is it for a male person to have both theses diseases.
Looking forward for the gene test......
_________________
Male
Aspie score: 131 of 200
NT score: 34 of 200
Possibly Aspie (diagnosed by an autism expert, doc moves abroad, forced to change docs and all say it's schizophrenia NOS or schizo-affective disorde or personality disorders. initial doc was a colleague of uncle Simon btw. you do the math.). (edit: by Uncle Simon I mean Simon Baron Cohen. Just to clear things up.)
Gee, I miss Germany, especially Bayern and Augsburg, where my in-laws lived... You can't really find Brezen in the US. Or even decent herbal Salatkroenung.
Even though you're heterozygous for C677T, have you tried the methylated form of the affected vitamins? Methylcobalamin, methylfolate, and pyridoxal-5-phosphate (in place of B6)? I remember some time ago reading that methylation is still somewhat affected even with the heterozygous condition. I've used l-carnitine myself. I also have used vinpocetine and huperzine, which increase cerebral perfusion. I used it because I heard it had been helpful to some autistics and also because I get vertigo once in awhile. But supplementing with them get more oxygen to your brain - some athletes use them pre-workout. If you are at all anemic B12 and dietary iron can help, and that will also increase oxygen to the brain. Aerobic exercise might also help - I need to get back to doing that myself.
That's really unfortunate about the insurance situation. It's the opposite from the US - I had genetic testing done which would have been over $6000 if it was billed to the insurance, but was just $370 because I paid for it myself.
Thanks so much for posting this. I’m trying to make sense of the last few years of my life and I think this information about anesthetics might apply to me as well. A few years ago I had an infection and after taking my antibiotics I gained 20 pounds the following month. A few months later I had surgery for my endometriosis. Since then I feel like my body can’t make energy the way it used to and my traits kept getting more severe over the years. It all came to a head last year when I was continuously overwhelmed at my job and quit in a state of burnout. I was so exhausted I couldn’t even care for myself and my brain felt like it was filled with mud. I don’t know anything about depersonalization but I felt very flat and completely detached from the people in my life. I was also not laying down new memories, even emotionally charged ones. My boyfriend would try to talk me about what was going on and thought I didn’t care about him anymore. We’d apparently have this talk every few months and I would never remember. I had taken short certification courses for my job and wasn’t retaining any of the information. I was also not dreaming during this time. I had no idea what was going on with me and didn’t know anything about AS yet.
I’m starting to feel better now. My brain function is returning and I can take care of myself again and have even starting exercising again. I’ll share what I did in case any of it helps you (please don’t sue me!). After quitting my job I basically isolated myself and engaged in my special interests to calm my system. I also did some self regulation therapy. I discovered I am homozygous for the 677 mthfr mutation and starting supplementing with the bioactive b multivitamins. That helped quite a bit with many of my neurological issues. I saw a naturopath who treated me for SIBO. I had occasional bloating and constipation once in awhile. This really reduced my sensory processing issues and other AS traits. She prescribed low dose naltrexone to help my gut motility and this is making me feel like my old self. LDN is often used for fibromyalgia treatment too. Read up about it, it’s an interesting medicine. It reduces pain, inflammation and stabilizes your immune system. It’s also improved my sleep and given me more energy. It feels like it’s giving my body a break from it’s overreactions and letting it move back to a healthier state. I’ve been taking l-carnitine, magnesium, and ubiquinol too. Acetyl-l-carnitine, bacopa and bike riding have really helped with my foggy brain.
I’ve had a number of times throughout my life where my AS traits have been more severe. Usually involving illness, antibiotics, stress or hormonal birth control. I did also have a tonsillectomy in high school and took bcp not too long after that and had a particularly hard time for a few years.
I had worked really hard to get to a place of acceptance of my new self. Accepting that this was my new life and trying to forget about how it used to be. Then my old self started coming back. I’m still struggling with talking with other people. I didn’t want to share anything about myself with anyone for so long and it’s hard to get out of that habit. I was in a panic the first time I posted on WP.
Good luck to you. It’s a scary time when your ability to function goes away.
I'm the OP .
I always thought that I might have mitochondrial disease, and that's why I'm getting the whole genome sequencing done, but guess what. seems like the genome test is pointless. I MUST have mitochondrial disease, as fibro is thought to be a mitochondrial disease, at least by some research. On the other hand, migraine is also thought to be a mitochondrial disease, and my mother has the worst migraines. And I have her mitochondria (obviously). It's funny. everyone with my grand grand mother's mitochondria is somehow in bad shape. That's more that a dozen people, in quite bad shape, in different ways.
I'm taking the following supplements since recently, and they really help. I thought I just share it here if someone is interested.
- Coenzyme Q10, the QH version, also called Ubiquinol, 200 - 300 mg / day (2-3 x 100 day) in divided doses. (still figuring the dosage out, causes heartburn)
- Cheapest vitamin B2 (riboflavin) pills I could get. 100 mg / day (2x 50 / day) (still figuring out the dosage)
B2 seems to be pretty crucial in MTHFR677 homocygote people. read up on examine.com.
-Cheapest L-Carnitine, 3 x 1 gr / day
-One cheap multivitamin for good measure
-Vitamin E 400 iu.
I have taken supplements you wouldn't even know exist in the past 10 years. all kind of combinations. I even tried weird hormones and other dodgy stuff. No matter what you can imagine, I've tried it. But this time I'm really feeling that I'm up to something.
CoEnzyme Q10 and riboflavin: the mitochondrial connection. ( in migraines)
Oxidative stress and mitochondrial dysfunction in fibromyalgia.
Could mitochondrial dysfunction be a differentiating marker between chronic fatigue syndrome and fibromyalgia? (mentions that FM people have a lower mtDNA/gDNA ratio (to me it means they have fewer litochondria, or mtDNA damage/loss)
A Modern Approach to the Treatment of Mitochondrial Disease (the study names supplements and dosages for supplements to treat mito disease. very very helpful)
Riboflavin lowers homocysteine in individuals homozygous for the MTHFR 677C->T polymorphism.
_________________
Male
Aspie score: 131 of 200
NT score: 34 of 200
Possibly Aspie (diagnosed by an autism expert, doc moves abroad, forced to change docs and all say it's schizophrenia NOS or schizo-affective disorde or personality disorders. initial doc was a colleague of uncle Simon btw. you do the math.). (edit: by Uncle Simon I mean Simon Baron Cohen. Just to clear things up.)
I'm surprised at some of the overlap in symptoms. About three years ago I was extremely sick, experiencing muscle spasms, memory impairment, insomnia, brain fog, and SIBO. It was so bad that I didn't want to live much longer if that was how the rest of my life was going to be. My doctor tested me for food allergies and other likely conditions, but didn't reach any conclusion. At that time I was concerned about mitochondrial dysfunction and researched it a bit. I'm wondering if some of these conditions tend to be comorbid with autism - I wish that information was more available, rather than each strange disorder I have being a new mystery to my doctor.
One thing she found was that although my body was producing a relatively high level of testosterone, my liver was hypersecreting sex hormone binding globulin (SHBG) that inactivated almost 100% of my serum testosterone. She prescribed injectable testosterone, which has helped decrease the muscle spasms. She also found cysts on my adrenal glands, and a benign adenoma on my pituitary. The pituitary is a master gland that regulates multiple systems, so who knows what the adenoma could be causing...
I was also experiencing two types of migraines: (1) non-painful ocular migraines (scintillating scotomas) - which are scary especially when they cover the center of my visual field, making it impossible to read or drive and (2) abdominal migraines (insanely painful and debilitating) which put me in the emergency room eight times in a two month period, until it was diagnosed and I was eventually put on Verapamil (a calcium channel blocker). My older sister had bad migraine headaches.
My doctor prescribed me low-dose naltrexone, which had no effect on the migraines, but interfered with the pain-killers I needed in the E.R. I take polyethylene glycol (an osmotic laxative) to stop the SIBO. I still go through prolonged periods of exhaustion but many of the other symptoms have greatly decreased.
I had two surgeries back in 1990 and 1991 and I had the onset of a number of health issues right then, so I wonder if I've had an abnormal reaction to anesthesia due to autism.
SIBO is pretty brutal. My relatives in their 80’s had more energy and balance than I did (I’m 43). It messed with my liver and my hormone levels too. Thankfully those are both getting better for me. My energy is up and down these days but I am so happy to have my brain function returning.
My mom has fibromyalgia too. I’m really hoping I can avoid it. My muscles always hurt when I press on them, even lightly but they’re not painful on their own. The LDN takes away most of my chronic pain. It’s such a nice relief.
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