I went to the neurologist this morning and after all of his tests, he said he couldn’t find anything neurological that could be wrong with me. He thought it might be behavioral, but that wouldn’t explain the morning heaving. He sent all of my records back to the gastro doctor and we’ll see what they say when they get back to us. So I’m kind of feeling a bit deflated.
Meanwhile, my mother is driving me insane to the point that I had a minor breakdown in the car while she was yelling at me. I had to repeat over and over that she needed to be quiet and she kept saying things like, “you have so many rules!” Finally, I said, '“these are the code words. If you hear me say the exact sentence, ‘you are making me anxious’ she had to be quiet and count to 30 in her head.” She agreed. Angrily. She doesn’t find that reasonable.
She’s also quite hard of hearing despite having hearing aids, so I’m having my wife sit in during these evaluations via Facetime so I can tell my mother “the doctor didn’t say that” and have someone else agree. It still hasn’t worked 100% of the time, but it has worked.
Also, every single time there is a possible diagnosis or she reads something that she thinks sounds like my symptoms (and she’s always wrong about that), she decides that’s definitely what I have and she definitely knows what should be done about it.
This time it’s worse, because she was a psychotherapist and she actually knows a little about behavioral therapy. But I feel really bad for her clients, because they had a totally crazy lady for a therapist. And she kept some of them on for like a decade after she officially retired. They came to her house. So they actually liked whatever she did for them. All I can think is that she has a completely different personality as a therapist.
Oh, she also thinks that the dry heaving every morning is inconsequential and I should just accept that I’m going to have to live with it the rest of my life. What. The. Fuck?
I guess it’s been so long since I’ve spent more than a few hours with her that I forgot how truly nuts she is. And a bit on the narcissistic side.
Edit: Ugh. This fucking guy again.
I can’t think of the exact quote right now, but I’m reminded of one to the effect of us tending to see the darkest motives in those closest to us, while being more likely to give more distant strangers a greater benefit of the doubt.
I’ve often found it to be true, where there is a temptation to judge a given behavior in a harsher light in someone we know well, than the same behavior would be judged in someone else.
I suspect your moms actual clients actually do get the benefit of a greater degree of professionalism than you do.
Interesting way of looking at things. And sure, she is probably much more professional with them. But the depths of her craziness… honestly, between her and my equally insane father, I’m glad I came out relatively sane. My brother did not. He’s currently taking absolutely massive doses of shrooms because he thinks it’s psychologically vital (no doctor has told him this) while his “supervising” wife sleeps next to him and writing on Facebook about his hallucinations and how they are so important psychologically to him. Like a month ago he was touting the benefits of microdosing. Now he’s at the point where he’s so disassociated from the world when he takes them that he thinks he has conversations with strange beings while being in other worlds. At least he knows that isn’t real, but for how long?
And that’s just his latest craziness.
I stick to weed. It helps with my neuraglia pain and it’s sure helped on this trip when I can get back to my room and vaporize some after dealing with my mother.
I’m sorry to hear about this setback. I’m crossing my fingers for you for finding a solution to your health troubles.
She’s also quite hard of hearing despite having hearing aids,
One thing to help you out with her on this. My aging mother was having the same problem and in talking to her I learned how isolating this becomes. There’s only so many times a person can ask someone to repeat themselves before its socially awkward. Many times the hard-of-hearing person eventually just gives up and nods pretending to hear and just becomes not part of the conversation. They can be a room full of people and be totally alone.
I found that her hearing aid brand has an external (bluetooth) microphone option and got her one. These are called “Buddy mic”, “Handy mic”, or “Partner mic”. It is a small rechargeable batteried mic that can lay flat in the middle of table of people (omnidirectional mode) or clipped on a lapel (unidirectional) that will isolate just the one person its next to (to combat loud noisy places and bring out the voice of the person being talked to). There’s usually a smartphone app the user can control modes and further filter sound. The one I got also has a 3.5mm audio input so you can plug it direction into a sound source like a TV which will pipe the sound right into the user’s hearing aids.
Find out her hearing aid brand and model and do a google search to see if hers has one. It will likely be a couple hundred dollars but it is a GAME CHANGER. My mother has had it and used it for months now and uses it all the time. If she is having trouble hearing in a conversation, she’ll quietly pull it out, set it in the middle of the table and is back in the conversation being able to hear everything and respond. She loves it!
The same may help your mother, and its possible some of the friction you’re experiencing from her may be her frustration with being sidelined because she can’t hear and her getting frustrated with that and it coming out on you.
Thanks for letting me know, although she absolutely never listens to any medical suggestions I might make even though she has plenty about me. She does say her hearing aids don’t work very well anymore, so she clearly knows she has to get new ones. And she does take care of her health. Hopefully she’ll get the right ones that do something like that.
Man, that sucks. Saw your update the other day and was happy to hear you at least had a tentative diagnosis and some progress. Is the gross mouthwash stuff still helping at least?
I haven’t tried it since last night. I haven’t been able to bring myself to do so today. I need to find some psychologically good place to be in before I try again.
Makes sense. Your update post paints a very clear (and stressful) picture. lol.
Rooting for you.
The real issue is I have no idea who else I could have come up here with. It was just too impractical for my wife and daughter to both come even though my daughter is in online school. So it’s crazy mom or me by myself and I don’t know that I want to be here alone either.
I’m so sorry to hear this update and I also feel for you on the overbearing mom situation. Would it be possible for you to occasionally take your wife and daughter, even if not for every visit? Or a friend who might be able to come (at least on the drive, and you could still facetime your wife during the appointment) every now and then? That might help ease your stress with your mom if she’s not there for every appointment, and goodness knows you don’t need more stress.
Sending lots of positive vibes your way. I hope things start looking up for you.
Thanks. I’m hoping this will be the only visit, but I will definitely look into that possibility if it has to happen again. Or maybe see if I can find a friend with a lot of time off. I don’t know. I do know that I can take the train if I drive an hour to the Amtrak station in Illinois and then take a shuttle from a small Minnesota town to Rochester and even have a private car for two people round-trip for around $450. Even coach is around $350. Definitely doing that next time. The 8 1/2 hour drive was way too long.
I know this is distressing and depressing, but try not to let the lack of diagnosis get you down. When it comes to unusual stuff, it can take years. It took so long for my partner to be diagnosed with Endometriosis, hEDS, and POTS, literally years for each one individually. She struggles a lot because many of the things that could help her interact badly with her other meds, so she has to pick and choose what to “treat.”
Anyway, the amount of time it takes can be brutal, but don’t stop looking for answers, and don’t stop advocating for yourself.
Also, try to minimize the amount of time with your mother if you can, because that certainly isn’t helping your mental state.
Thank you. The problem is I don’t have years. I can’t just not eat solid food forever. I was overweight when this started but I’ve lost 80 pounds and the weight loss has not stopped. This is kind of a desperate last hope and we don’t know what we’ll do next.
Try not to lose all hope. As shitty as it sounds in terms of quality-of-life, lots of people are unable to eat normally. I’ve known a few who had a feeding tube into their belly. Like I said, the issue of quality-of-life notwithstanding (because we all know that’s not a great quality-of-life), there’s solutions that will at the very least keep you alive until a better solution is found.
Oh man, I really empathize with you. There’s nothing worse than a stubborn, narcissistic know-it-all mom who still treats you like you’re twelve instead of a grown-ass adult. They never understand how they cause you anxiety, and they always think your problems are all in your head and somehow your own fault. They never realize how they wear you down by tearing you down.
I bought my dad a book for his birthday called Old Jews Telling Jokes*, and no lie, the first one he read was “What’s the difference between a Jewish mother and a Rottweiler? Answer: eventually a Rottweiler will let go!”
Levity aside, hang in there and stay strong. You’re in the best possible place for finding a diagnosis, and despite what the neuro said, you did have some small progress yesterday. Don’t let her nonsense overshadow that. And keep venting on Lemmy because we’ve got your back, and we know how draining overbearing moms can be!
* Side note, this was first successful gift I’ve bought him in ages. He’s 75 and famously hard to buy for so this was an enormous victory that I will be proud of probably forever haha
That’s definitely my Jewish mother. Although I had my wife talk to her in texts today about how doing the lidocaine thing for the rest of my life was simply not an option because she didn’t accept it when I said it.
Oh, she also thinks that the dry heaving every morning is inconsequential and I should just accept that I’m going to have to live with it the rest of my life. What. The. Fuck?
Even morning sickness tops out at 7-9 months, lol. Hang in there. Hopefully they sort you out. Mayo is certainly the right place to be trying.
Thanks, I hope so.
And yeah, my wife had morning sickness almost her entire pregnancy. It’s one of several reasons why I never brought up the idea of having a second child.
All I can think is that she has a completely different personality as a therapist.
I am sorry you’re having to experience this. It is a horrifying behavior that is very, very common among people with different social groups, and especially professions that ‘serve’ or help people. Doctors, EMTs, nurses, therapists, even cops or firefighters… I’ve seen it in all of them. They are exceptionally kind and caring until they clock out, and then are vehemently demanding of perfection, calculating in their coldness and disdain, and nearly psychopathic about other things that they find irritating in those they help while on the job. They completely suppress or sidestep their feelings about the issues while on the job, and let it all out on the people who are close, like family.
I know you’re having advice chucked at you from all directions, and in the last big post you said you had tired of that, so ignore everything after this if so and I’ll put it in spoilers.
spoiler
I knew of an individual who had issues (not similar to yours, but hauntingly parallel, in some ways) that were not responsive to medical interventions. The only thing we could do for him was seek psychological therapy for the depression that was plaguing him due to his health. Some of the physical symptoms were alleviated, and some became responsive to medications. While not completely healthy, the easing of the psychological illness altered the psychosomatic symptoms that blended with the more typical physical causes, enough that they weren’t masked and making the overall effects much, much worse.
I would really, really avoid your mother, who seems to be a negative spot in your world, and see if professional psychiatric/psychological intervention could help at all. I’m not saying you’re crazy, or it’s all in your head. Psychosomatic illnesses are real, and a horrible thing to suffer. They are definitely not something you can “just stop thinking that” away. I’m also not saying that’s what you have, but if no other doctor has suggested therapy while they continue their work in diagnosing you, maybe consider it.
Thanks. I avoid her overall aside from brief visits so my daughter can see her grandmother because she’s so nuts. This morning she told me that I’d probably have to do the lidocaine compound mouth numbing thing the rest of my life. I told her I literally wouldn’t want to live if I had to spend the rest of my life eating food I can’t taste with a numb mouth after tasting something so terrible I can’t even keep it in my mouth for the full minute in the instructions. I told her just thinking about that gives me self-harm thoughts. And then she said, “I don’t know what you’ll do if you get cancer.”
I said, “try everything and if that didn’t work, I would die.”
She said, “it’s highly unpleasant, so how would you handle it?”
I said, “do you think the past seven months have been pleasant for me?” She thinks I could psychologically handle eating without any taste for the rest of my life if I can even eat more than a few mouthfuls with the lidocaine compound. She says I’d get used to it. Like anyone could get used to that.
I wish I had someone else to go with me, but I don’t and I need someone.
Jesus is she ever crazy. I am so sorry. I’ve been following along with you OP, and I keep hoping you’ll get an answer.
Do you smoke weed at all Squid?
Always makes me smh when I see young folk bleating about how safe weed is. I’ve known dozens of people that have smoked for 20, 30, 40 years+ and literally every single one of them is totally fucked up in the head, in exactly this kind of way :(
To he honest, a lot of them were fucked up when they started. A lot of people use weed to self medicate.
I’m curious because I think squid might have CHS. If it’s even possible they should check!
Decided to post for others on lemmy:
It actually lowers your IQ.
I’m interested in hearing more. So many people I know are seriously fucked up from Pot.
They are willfully ignorant that it is a drug of denial, same as alcohol.
I started smoking in 1986, yes I’m an old cunt 😂
Have watched dozens of friends go off the rails and stopped smoking myself 15 years ago due to going a bit loony every time I smoked
About 10 people I know didn’t give up and are now 50 year old paranoid wrecks, with no exceptions
It fucks you up, there’s no doubt
It looks like on your general information post, you didn’t want medical advice, so I do apologize if I’m stepping on toes here, but in another post, you mentioned Trigeminal Neuralgia.
My speech therapist actually got into her line of work because of experiencing face/head/neck neuralgia herself, (on top of being a singer) and so her practice includes manual therapies on top of the more typical speech therapy practice. (apparently its more popular in speech pathology training in the Boston/New England area, so not sure if its as accessible around you)I suggest looking into manual therapies for treatment, and speech therapists may be a good place to start looking for it. Its made a world of difference for me and my own SLP.
Also, I’m a little curious about Cyclic Vomiting Syndrome. It’d be a bit of a long shot in your case, but if you feel the strong urge to bathe in really, really hot water, tell your specialists- its an obscure one, usually associated with children and gets written off as a form of migraine in adults.
Speech is not an issue for me, and I do not vomit, so I’m afraid neither of those are relevant, but thanks.
I’m not saying that you have speech issues, but that some neuralgias can be treated with manual therapies, and speech therapists are a good place to look for people trained in face/head/neck manual therapies. Its a disciplinary overlap.
IDK if your type of neuralgia can, but if your doctor scthink its a possibility, then its a direction to go in.
I do know that speech therapist is definitely one of the last specialists I would think to seek out for that kind of specialty. I just lucked out on my own because I was also experiencing speech issues. (It helped me regain neck movement)
I have zero speech issues. I used to do voice overs for a living, so I would definitely notice any change in my speech. There is none anyone, including neurologists, have managed to detect. In fact, I even did a quick gig for an old acquaintance who contacts me occasionally to do voices for his online games a month or so ago.
Just to add clarity to what I think the person above was saying, a lot of the conditions SLPs help treat have nothing at all to do with the voice or language. For example someone who has no changes or problems with their speech whatsoever but has problems swallowing may get benefit from seeing an SLP who is a Board Certified Specialist in Swallowing and Swallowing Disorders (BCS-S) and primary/exclusively treats patients with dysphagia.
That said I have no opinion whatsoever on whether that is relevant or useful to you. Just clarifying the misleading nature of “speech” front and center in “speech therapist.”
This is exactly what I mean, thanks.
Swallowing is not a problem at all.
Hey. No need to answer. Probably already tested for it. But if not, consider pancreas issues. It can annoy everything around it when crabby.
I had a HIDA scan which would very likely have picked up any abnormalities there, but also plenty of blood panels that would likely detect it. The gastroenterologist hasn’t brought it up as a possibility, but I can mention it.
I hope they keep looking into it and get something figured out. I assume they’re doing basic blood work like a comprehensive blood panel? Autoimmune diseases? Unfortunately, my experience in the medical field is that sometimes if they can’t figure it out relatively easily, they sort of give up, and eventually the condition gets worse and becomes more obvious and easier to diagnose.
I’ve had every test you can imagine.
When I was there, I had a lot of tests… but they never tested for type 1 diabetes, and it turned out I had type 1 diabetes.
I’ve had that tested elsewhere. I’m only here because every test and even gallbladder surgery has failed.
Sure. I wasn’t suggesting T1 was your problem, just that sometimes it’s a matter of lucking out on a doctor figuring out what the precise thing is. In my case, it kept going for another year until it was obvious when I went to the ER. Hope they do help you.
It’s tough having parents that aren’t able to understand what you’re going through. I know all about that.
Keep seeing doctors. Specialist. Just keep going, someone will figure it out and you’ll be glad you didn’t give up on it.
Chin up, brother
Thanks. I just wish I could have taken virtually anyone else. But she was my only option. And she’s paying for the AirBnB. Not for gas though.
Hi! I just read this, and man that is such a frustrating situation to be in. I dealt with severe food aversion when I was in high school, and ended up getting a diagnosis of gastroparesis. Similar to you, there was a day where I just suddenly got “better”, although I never recovered to the point of having a normal appetite for a person my size. I never reached the point where the smell of food triggered a gag reflex, but I’m definitely familiar with how personally we take our relationships with food and how that must be affecting you and your family. I’ve been in situations where I desperately wanted to eat something in order to make someone’s effort feel appreciated, but haven’t been able to because of my body. When I read about you not being able to get a meatball sub for your daughter, it brought up feelings I hadn’t thought about in over a decade.
Do you know of any mutual aid groups that could help you with transportation or lodging or financial aid in Rochester, if you ever have to go back? It may be worth looking for other ways to access care
Thanks. I do know they have financial aid and such. My mom is wealthy and offered to pay for it, which I really couldn’t turn down despite her insanity. I wouldn’t mind staying in a Motel 6 or whatever, but I can’t complain about being in a much more comfortable AirBnB. She’s also offering to help cover the massive medical debt I’m already in and that will only get larger, so I can’t act like I’m in any way ungrateful since I really appreciate the help.
However, I also did not expect it to be this bad. And I really didn’t realize how bad her memory and hearing are. She’s 82, so I should have just expected that, but when it’s your own mother, you don’t really think of her as this old lady who doesn’t have all of her faculties. Not unless it’s really obvious.
Anyway I will not do that next time, if there one, so I will definitely be looking at other options. If I’m unlucky and I do have to come back, it might be the summer, in which case my wife and daughter can come along.
Thanks again.
No problem! My mutual aid budget is reserved for helping a trans friend move out of Tennessee right now, but please let me know if you have an emergency expense come up and I might be able to help
Thank you!
I am curious about your daily diet.
Fasting responsibly with plenty of water has been used for thousands of years as a healing mechanism or reset for gastrointestinal issues. Perhaps a hard reset may help and then slowly reintroducing things like organic bone broth and working towards nutrient rich whole foods and vegetables, with lots of water and good sleep.
This is coming from a place of love as I am a fan of Flying Squid.
I am rooting for you. Sending good thoughts your way.
This man is a good resource on fasting if you’re interested— Dr. Dominic Dagostino
My ‘daily diet’ is Ensure and V8 with the occasional chai latte or root beer.
If I could eat vegetables, I would eat vegetables.
I recall you saying part of the problem you have is hypersensitivity to the scents of various foods. If you can tolerate V8, I’d assume you can consume vegetables in liquid form in general? You could consider getting a juicer and making some different blends. Personally, when I was starving, I tried surviving on protein powders and very soft foods but that wasn’t working. Eventually I made chicken broth, chicken and blended it up sometimes with potatoes, corn or rice, and it doesn’t sound appetizing but actually worked great and saved me from starvation. I found some neutral tasting protein powders that were good with juice or broth too… pea and hemp worked for me.
I can tolerate V8 if I don’t inhale and get rid of the glass/can immediately. It’s more of a last resort thing.
Yeahhh, as wikipedia always says: <citation needed>
