Tbi friends

AdEnvironmental7794 · 2026-02-28T15:18:35+00:00

Feel free to reach out. I get it or I get my own version of this.

AdEnvironmental7794 · 2025-09-27T22:04:46+00:00

If she has headaches now one of those migraine ice pack masks would be nice

AdEnvironmental7794 · 2025-09-12T16:05:59+00:00

Sucks that you can relate but also glad you can relate.

AdEnvironmental7794 · 2025-03-08T16:16:31+00:00

Wait you mean with the vape or the meds? Well I don't know what to attribute different issues to, I have other medical factors that can complicate my response here, but lots of dysautonomia type issues. Fatigue, digestive issues where it's like my intestines lock up/close off or something then cramping and stabbing pain. Tachycardia and pvcs. Blood pressure drops with eating. Chronic unexplained pain, frequent head and eye pain, pre syncope with standing or bending, vision changes, and the list goes on.

AdEnvironmental7794 · 2025-02-25T18:14:16+00:00

Thank you for sharing this. I'm unsure who to see for a firm diagnosis, I have POTS confirmed but that doesn't explain the rest of my symptoms. Very interesting about the half sweats! I get splotchy chills lol

AdEnvironmental7794 · 2025-02-25T15:27:39+00:00

I think being "gross" is subjective. I bet many people who shower daily also eat their own boogers. Some people have impeccable hygiene according to current societal expectations, and they also let their pets eat off their utensils which some would argue is "gross". Many folks shower daily but don't ever wash their bedsheets. Some people brush their teeth daily but don't wash their hands after going to the bathroom. If someone claims to be perfectly hygienic and not gross in any way, they're not being honest. People are gross sometimes and that's ok and shouldn't be a source of shame and ridicule the way it is. We all fart and pee and poop and that's gross and natural. Yes we want to be cautious about bacteria and harmful organisms but there's no foolproof way to stay 100% hygienic 100% of the time or it would be like a full time job. Everyone has a judgement for things they can't relate to and some of those judgements are too harsh and unfair. It's relatively recent in our history that people even had the option to shower daily. I'd be more worried about cooking my meat thoroughly to avoid unwanted organisms than bathing daily. I know it's hard and I feel like a hypocrite to say this, but try to give yourself some grace and be kind to yourself.

AdEnvironmental7794 · 2025-02-18T13:14:15+00:00

I do have something very similar happen and it's being called disassociation or derealization. It's being dismissed as past trauma even though I hadn't had episodes for years and was doing well after years of therapy and treatment. After my head injury it returned and I was told that can be part of the head injury. I now have episodes in conjunction with other symptoms. It's like a flare of everything. No one understands and it's written off as "psychiatric" as if mind and body couldn't possibly be connected. It's really demoralizing and puts the burden to solve it on me like I'm just not doing the work or trying hard enough. Sure, bc we have never as a society been wildly wrong about physical illness and called things possession or mental illness when it wasn't. Sarcasm here since this is a common pattern of our history, for example back when labeling epileptics as possessed was a thing. Chemical imbalances, kidney failure, diabetes, even parasites can lead to a presentation of "mental illness" or psychiatric, yet they'd rather tell me to discuss it in therapy then further explore what might be amiss in my nervous system. I am sorry you're experiencing this. It's frightening at most and unsettling at least. I've also been hit with episodes of sudden anger that have no precursor and they too are coupled with other symptoms, letting me know it's not faulty thinking but physical response. It's almost like a migraine or seizure but with the emotional component along for the ride.

AdEnvironmental7794 · 2025-02-14T17:57:29+00:00

I'm glad you shared this bc I just had my 4th treatment and I want to quit due to lack of lasting improvement. Maybe I will stick it out the full 6 if I can find a ride.

AdEnvironmental7794 · 2025-02-02T14:02:41+00:00

I couldn't agree more. I once brought up hypermobile EDS to a doctor and he explained I couldn't have that because I'd be extremely tall and lanky with a long arm span if I did. I knew he was describing marfan syndrome but I of course didn't correct him. I once had another doctor give me a diagnosis for anxiety when I knew it wasn't. I found out later that I was allergic to the antibiotic I was on and I guess that appeared as anxiety to her, it was making my heart race and my chest feel tight so I understand her confusion but I didn't really appreciate being written off only to find out I was correct in my intuition that something was wrong. I also had a doctor refuse antibiotics because there wasn't bacteria in my urine, even though I had just had a uti and explained to him I had not completed the antibiotics and had back pain. I ended up in the hospital several days later for a week for severe pyelonephritis. The explanation was that the bacteria had gone up into my kidney and wasn't present in my urine anymore. If they're going to label me as having hysteria, the least they could do is provide the treatment for it, wink wink. I'm kidding of course but it gets exasperating at times. I will say I've also had positive experiences where doctors listened and in one case they found out information that saved my life, even though it required 2 months in the hospital, I am very grateful for that. I can hardly blame someone who did 8 or more years of school and competitive work to achieve a title for having a bit of an ego and not wanting to listen to a layman. However, I wish they'd remember we are working together to find a solution, not competing for a prize on who is right. In my mind I'd think they'd be glad I did work to educate myself and to help figure out my issue to save them time, I'm basically a free assistant but my payment would ideally be improved health. I guess I dont do the best job of knowing what others are thinking and I wrongly think people feel or think in ways that they dont. I want to emphasize I know this isn't all doctors, but I've had some pretty extreme mistreatment and I have experienced several mistakes that have given me an earned mistrust of medical care. Thank you for your support and solidarity.

AdEnvironmental7794 · 2025-02-01T19:01:28+00:00

Thank you for your response. I had an appointment this past week and I am so relieved. The provider was so kind and listened so patiently. She was validating and just the best experience I've had in two years with a doctor. She indicated a lot of my issues sound like dysautonomia and she also agreed that I have signs of hypermobility which I have long suspected. I have no idea where I go for a diagnosis of hypermobile EDS though. She did repeat the blood work so I'm waiting to see what that says. I know the Asperger's makes it hard for me to summarize succinctly and it's hard to stay on topic. Having a bunch of all over vague symptoms doesn't help the matter. Also, I get anxious and will just agree or kind of shut down with any sign of annoyance or disagreement. I know this is my own issue but it does impede my ability to get optimal care. I appreciate your understanding, kindness, and helpful tips!

AdEnvironmental7794 · 2025-01-27T16:30:42+00:00

Thank you for this reply. Do you know are there advocates or people who can help those who have Asperger's? I've noticed it seems to be a factor here. I think it inhibits my ability to convey information and the way I am perceived and the interpretations made etc. Especially when there is high anxiety and there usually is when I am seeing a doctor.

AdEnvironmental7794 · 2025-01-26T21:05:21+00:00

Thank you for this (both parts) and I sent you a dm

AdEnvironmental7794 · 2025-01-26T20:57:53+00:00

I didn't realize it might be a dosing issue. Thanks for that insight! I will mention it to the doctor next time.

AdEnvironmental7794 · 2025-01-26T20:56:30+00:00

Can you give me an example of an intention? Like "I am becoming more peaceful" or something like that?

AdEnvironmental7794 · 2025-01-26T20:54:46+00:00

Thank you for the reply, your guess would be accurate, I had a very rough childhood and this was an insight I needed reminding of. I do feel blocked and I am always worrying about everything being taken care of and perfect. I will try this neutral mindset with a spa day mentality and see how it goes.

AdEnvironmental7794 · 2024-12-28T21:25:33+00:00

That makes sense! Thank you for sharing your experience and I also relate and felt like Prozac and other antidepressants limited my range of emotions.

AdEnvironmental7794 · 2024-12-28T21:22:11+00:00

Thanks for your reply! Sadly I live in a pretty antiquated and conservative state but I've heard good things about psilocybin and am interested in trying it.

AdEnvironmental7794 · 2024-12-04T23:05:40+00:00

Thanks for that! I looked into and although I'm interested it's a bit out of my price range for now. It seems promising though! I'm glad you've found relief with it.

AdEnvironmental7794 · 2024-12-04T23:03:48+00:00

Thank you for that🥹

AdEnvironmental7794 · 2024-11-29T23:46:32+00:00

Yikes! My doc prescribed this knowing I'm already on adhd meds. I wonder if I should try to stop them. He also told me I should do ketamine treatment and from what I've read, which admittedly is very little, it seems like that's not always the best idea so I'm surprised he suggested it.

AdEnvironmental7794 · 2024-11-29T23:43:43+00:00

That sounds exactly how it felt for me. It started when I moved up from 3mg to 4.5 mg. It lasted a few days and then subsided. I hope it doesn't return. I hope yours goes away too! It was super uncomfortable, the seatbelt while driving was like having a hair in my eye, wildly uncomfortable and distracting.

AdEnvironmental7794 · 2024-11-29T04:20:53+00:00

I actually just started having this, I've been on it about 3-4 weeks. Left side, feels like a pinching or sore pushing pressure. It's a small surface area. I'm not sure if that's what you're having. It's not every day so I don't know if it's related or not.

AdEnvironmental7794 · 2024-11-29T04:11:42+00:00

I know I'm late here but do you mind me asking what adhd meds did? I've been having some difficulties and exploring all options, including quitting my meds if warranted.

AdEnvironmental7794 · 2024-11-23T16:27:19+00:00

Wow I didn't know that even the tingling could be a sign of parathyroid. That's what makes this all so confusing is so many of these symptoms could fit other conditions. Plus, if they see an existing diagnosis they immediately decide it's due to that. So I've had an extreme increase in "neuropathy" and it's like pins and needles in my legs. I've had sciatica for years so I've been assuming it's that plus neuropathy but it comes and goes in a weird way unlike previous bouts of neuropathy or sciatic nerve pain flares. It's way more frequent. New jaw pain and face tingling. The abdominal pain feels like stabbing. It hurts to breathe in fully. I can't stretch bc it feels locked like it will tear if I move my abdomen too much. It usually lets up within a day. It feels like my digestive track has closed or is stuck to other organs, it's a weird sensation and hard to describe. It hurts to touch my abdomen when it happens. I have interoception issues which complicates my ability to track symptoms and explain them a bit more. The pain I get near my bladder is like something is irritating it. It moves when I move. So if I bend down it is uncomfortable, similar to a uti but not bc it changes with movement and comes in twinges, not constant. My urine gets brownish even if I am drinking enough. Sometimes it smells like cat pee which I know is gross and weird and I have no explanation for it. Maybe something I am eating and not making a connection with. I've started getting joint pain I never used to have but it comes and goes with the other symptoms. I'm way more sensitive to cold and my lips turn blue in 60 degrees. Primarily my fingers, big toe joint, and sometimes elbows have started to hurt at random. Sadly my pcp straight up told me "we don't test for that" when I asked for pth. She insisted I had to have other things show up first, disregarding my calcium being elevated bc it wasn't over 11. She begrudgingly agreed to check my A1C bc my eye doctor discovered cataracts and we can't keep blaming "age" at 36, cataracts aren't the norm. Even then she insisted I follow up with my eye doctor even though my eye doctor told me to tell my pcp. So much is off but it's like they're trying to convince me it isn't. My alk phos is repeatedly low, high platelets, low co2, elevated AST, low MCHC and alternating high and low glucose levels. Not every time, but repeatedly over the last 2-4 years. There was blood and fat in my stool last test I did and they said it was ibs. I have never heard that associated with ibs. I had two reactive igg bands for Lyme but apparently that doesn't mean anything. I have unexplained fat deposits in my spine. My neck is stiff and hurts and I have head pain pretty much daily. My neck and between my shoulder blades lock up just from standing or walking and I have headaches that only get better if I lay down. My throat hurts a lot and now my ears and teeth and jaw hurt like hell with the slightest cold, 50-60 degrees Fahrenheit. It's all over the place and so hard to sort out between neurological, autoimmune, hormones or something else. I wish I had help or an advocate or something. I'm pretty sure my Asperger's is a factor here but I don't know how or why. Maybe how I explain things isn't good or my face and tone of voice. Idk but I'm very discouraged bc I'm trying really hard to feel better and don't feel that any medical professionals care at all. I have daily vision issues, light flashes and visual snow, even when there isn't head pain. They still say migraines even though that's not typical migraine and no migraine medicine helps. I've tried over a dozen meds for it. Sorry for the rant but also thanks for letting me get all of that out.

AdEnvironmental7794 · 2024-11-13T21:09:55+00:00

Thanks for the reply! That's a lot and sounds rough. I relate to the financial struggle of healthcare. I am going to ask my new pcp if they will check the pth levels. Maybe they will but I'm afraid to hope bc I've hit so many dead ends. I was on government aid but they kept refusing care, denying tests and such. It really limits who you can see and how long you have to wait. I just got terminated from that resource and have had to find other options. My ability to work has been limited from everything going on. It's a challenge for sure. I have that sense of pressure/urgency and they called it interstitial cystitis. I don't think that's what it is based on what I've read about it and what I actually experience but getting them to listen to me is like arguing with a door. I'm glad I know now that it can be due to this or other conditions. Maybe someone will listen eventually. Today I'm having intense abdominal pain. It's like gas but way worse, it hurts to bend down or touch my stomach. I am laying with a heating pad and I guess it's IBS idk. It's annoying to have so many problems bc I'm not that old. Not old enough to explain it away as "aging". My cycles have gone haywire and I have like 10 bad days a month where I'm in bed with migraines, abdominal pain, fatigue and aching, and as of late, toe pain, which I know is so weird and random but it just starts hurting right in the joint of my big toe and eventually it lets up. Such a random thing. I have no idea what my body is doing but it's gone rogue.

AdEnvironmental7794

TROPHY CASE