jake journal

[jakesmith]

My main thread had a depressing title, so will just use this instead.

I had one molar that was infected like half a year ago. After nuking it with clove oil and 3 days of antibiotics it rarely or never bothers me.

Then another molar decayed relatively recently, giving me most of my issues, got worse after giving away my cat. It's been hurting about every 4-5 days then i pop 1-3 tylenols and it goes back to 0.

I'm relatively young and have a healthy immune system, and am getting enough calories and nutrients and sleep. Benzodiazepine dependence and dysautonomia are making treatment options difficult. Most antibiotics are gaba receptor antagonists, which seems to explain why i could only tolerate like 2-3 antibiotics last year and now don't really tolerate even those. Additionally, the dysautonomia makes my vitals go into dumb territory when i'm in terror like at a dentist, and i'm worried the same would happen during GA or sedation.

So for now I just am sad and work a bit and hope this doesn't turn into anything deadly serious. An admin here said it was nearly impossible to, but if I get swelling or something i'll go to ER. Generally the ER doesn't give a shit about me unless there's something clearly wrong, same with urgent care or other doctors so I kind of feel a lack of love or care from my local providers. I honestly would prefer someone just care about me, in my physical real life, moreso than fixing this or that problem.

 

[jakesmith]

Today I'm gonna ask my doctor at a virtual appt if it's worth starting an antibiotic considering my (very poor) reactions to them in the past. With no swelling or weird hr/bp/temp it's not an emergency. But it'd be nice to have something on hand at the least. The pain in the relatively newly decayed molar that is decaying to the gumline on a corner is moderate and constant for hours at a time every few to couple days, and not sure how healthy frequent painkillers are. I make sure not to exceed 1,000mg tylenol on any given day, or at least not more than 1,500mg in some cases. the max is 4,000mg per day.

I just thought the pain would die down by this point but its kind of just the same for a couple weeks. A while ago I could have just nuked it with clove oil but now don't tolerate that anymore.

Anyway I am truly on the fence about antibiotics without visible swelling. It could trigger psychosis, seizures, allergies, or high bp, some of this relating to the fact that nearly all relevant antibiotics are GABA antagonists and my 15 year diazepam dependence.

Will be interesting to hear what they say at least. Ideally I'd be going to an allergist, infectious disease specialist, dysautonomia specialist, and oral surgeon, to square away everything but my agoraphobia prevents marathon doctors appts like that. I can hardly tolerate leaving my home since around 2020.

Maybe I can ask them to take a super duper low dose of something and titrate myself up, that seems the most reasonable. Otherwise if nothing works, or their plan is too dismissive of gaba antagonism, I Just keep taking painkillers.

 

[krlovesherkids777]

Hi Jake, Just want to say I hope your pain goes away and you get an answer on the antibiotic.

 

[jakesmith]

The pain is mostly absent after brushing, or its near the end of the day. I am trying to keep myself as nourished as possible. I'm just trying to make my life as livable as it is as this point. No doc has pushed for an antibiotic without swelling at this point. Of course, they never leave it off the table for anything anytime, but not sure its worth taking one and then it blocking all my GABA receptors and having panic attacks going to the ED 20 times (like in 2019 or early 2025), they really mess me up that bad and my parents are threatening homelessness again. At this point they are saying they will put me in a group home, not over tooth issues, but they've been saying this for years. But now they're going to a lawyer about it, and everyone's been spending years inventing (false) excuses as to why I should be exiled from the family, it was hurtful this time around though. I'm tired of institutions, they all believe different things about medications, and all give a different diagnosis, and the forced med changes are life threatening at this point. Can only live day by day and make each day comfortable as possible.

If I keep persuing this until my parents abusively push me off my health insurnace (cuz yea they're doing that too), I go to ID specialist for specialized antibiotiocs on hand, plus yet another appeal to my local oral surgeon who has hospital rights and is on my insurance, he blew me off last time. A good thing is I got a doctor to write a letter encouraging hemodynamic monitored extraction if it becomes life threatening, due to my dysautonomia, maybe stretching EMTALA, dunno, but that was the point.

 

[jakesmith]

good news, my white blood cell count is normal, not even elevated. CMP, CBC etc are normal. I just need to focus on calories.

 

[jakesmith]

Been having weird symptoms lately. But nothing impacting temperature, average heart rate, blood pressure, and no visible abscess swelling. My guess is I have 1-2 decayed back molars with periapical abscesses that can only be seen with x-ray, as has been the case since first post in this thread, and before. Another molar has some mild decay but no signs of infection.

i still feel defeated. don't know of any antibiotics i tolerate, they seem to cause serious side effects, and last time required a doubling of my benzo, which i can't do anymore. two dentists basically ghosted me. can't find an oral surgeon anywhere near here who takes my insurance, and also would take time to calm my nerves or refer me for GA, or give me sedation. I'm also terrified of sedation and GA. I'm also worried A&E wouldn't catch everything if things got bad or they wouldn't extract the tooth if things got really bad. Last time I went, even though my bloodwork was fine, they spend 0.5 seconds looking at the tooth. I also get way too terrified to really leave my house for anything but A&E. I'm also upset my parents aren't here for me. My mom blocked me on her phone and facebook, then left facebook. I think My dad is malicious is unpredictable. The chance of being rendered homeless is very very low right now though and the guardianship threat extinguished. I went through something similar with a tooth in 2019, my but mom helped a lot and stayed with me, even in the room, until it was fixed, and i also tolerated antibiotics well back then.

I only chew on left side of mouth, the molar on right side doesn't hurt at all on manual pressure or wiggling but hurts too much with food chewing for some reason. That also makes no sense to me. I don't get how people live with tooth infection for years and years. And don't know what to do, if anything even absolutely has to be done.

 

[jakesmith]

I have yet to have a single doctor really care about any of my health issues. It's been like this for years on Medicaid, which only recently started covering (limited) dental services in my state. Other people on Medicaid don't have the same experience, but when I was on a private plan before Medicaid, it was as if everyone was selling themselves to treat me, even for treatments I didn't need lol. Medicaid pays each doctor like 25-30% less than usual, and only recently started covering very limited dental services.

My parents never really took health issues that seriously, except for themselves, and only in very old age. Now one of them will likely not push past 70, despite world class health care. I can see the other living 82+ if they continue trying to be healthy.

I spend a lot of time worrying about losing control over my life. Of unplanned death, severe, or terminal illness. Sometimes it's about 50% of what I think about, until I go to sleep.

 

[jakesmith]

started an antibiotic cuz bad pain, ignoring horror stories, most seem to tolerate, should be fine. will titrate up.

 

[jakesmith]

reacting the same way i do to almost all antibiotics, ie not fantastic, stopping the antibiotic unless a doc at my PCP tells me to continue

 

[jakesmith]

my bloodwork is still fine

had a cardio workup as well which came back fine.

last night i was in so much pain my sleep was fragmented. miminal to no pain this morning. for a few weeks now it's felt like there's lymph node involvement, or something in jawline and sub-mental area. but ER docs palpitated and looked and it multiple times and weren't worried. i'd prefer to do a few rounds of antibiotics just to maybe buy me a few years of no pain and stop worrying, but docs are scared to prescribe any more with my skin reaction history and seizure risk.

My health anxiety has been very severe, i've thought i was dying from DNM, sepsis, blood clots, heart failure, among other things.

No one has really investigated my medical issues, inclding dysautonomia for 10 years so i'm not sure if i'd actually do GA even if offered cuz they'd have to tailor it around whatever my dysautonomia type is, which i have no clue. I don't feel comfy in a state with no antiobiotics or treatment plan. But I am still able to transport self to ER and use virtual urgent care.

If the pain gets too bad again like last night i guess i try some of the more dangerous antibiotics for me. So bizarre because a decade ago i found dentistry relaxing now i'm worried about my health over avoiding it.

I've thought about checkin myself into mental hosiptal almost every other day, not because they'd fix my issues, they might not, but it'd leave me blaming any issues on their inaction rather than worrying I"m doing somethin wrong. Issue it lately they alays push for life threatening rapid withdrawal procedures so i dunno, i'm living hour by hour at this point.

 

[jakesmith]

have a consult with a good and highly rated oral surgeon, will let you know what he says
my mom is driving me so it shouldn't be too nervewracking

 

[jakesmith]

well i went - in person to the oral surgeon today, - and sat through about a minute of someone poking in my mouth, more than i have in about 10 years

oral surgeon was snippy, not having much time for my anxiety, and not doing really any back and forth, was busy, they had squeezed me in

they can do hospital extraction and scheduled it, that's all they were comfortable with doing and makes sense. i might back out if i can't reach the anesthesiologist beforehand or coordinate something safe. because i have dysautonomia i don't want them to just pump me with the usual. he was just like 'they'll figure it out when you get there and make the decision', though the staff then said my PCP could dictate what not to do and what to do.

They also need someone to clear me in general for anesthesia, meaning, I should be scheduling dysautonomia appointments to determine subtype I guess.

He is very highly rated, so i'm not worried about his skill, i wanted to speak to the anesthesiologist.

Also, they are adamant neither tooth is infected OR abscessed, good news if true!

Different than what the ER suggested and what two prior dentists said across 7 months. The oral surgeon I saw today did CBCT and CT without contrast and visual examination, said no bone loss or evidence or infection or abscess in either tooth. Doesn't explain why i can't chew on one of them due to pain, an assistant was like that could be many things and said I had a very very large amount of tooth decay around a live nerve, so maybe that explains it

 

[jakesmith]

probably not going through with the hospital extraction unless pain returns or they confirm an infection, they will default to GA and i don't know of any provider at the moment who is going to take the time to clear me for GA. Would I survive GA? Probably. Is it worth it if the teeth are just decaying, limiting my chewing to one side of mouth, and not infected? I'm not sure.

 

[jakesmith]

basically out of oral antibiotic options altho i do have something of a safety net in my care including
- an insurance case manager doing a lot of research
- an ID specialist who can administer like maybe the only remaining non-fluruoquinolone antibiotic, an IV one, which i'd rather reserve for emergencies. after that drug i think it's just fluroquinolones and that's high-risk for me
- an oral surgeon (albeit flaky and not willing to do in office procedures)
- a local dentist

Next year I might have none of these things with USA cutting Medicaid then. I don't get why my body is supposedly attacking me at age 35, nor why i can't tolerate meds well anymore. Like aren't there third world countries where people just eat rice all day and they live to 65+ and don't all drop dead of tooth infections.

I'm very tired of thinking about this. Was not on my bingo card this year. Maybe my mind is using this as a thing to crowd out longer term issues, by making this the big issue. I dunno, but if there was a special needs dentist willing to do some kind of "in chair therapy" over weeks that'd be ideal.

Just having a hard time IRL getting answers, prognosis, agreement, evaluation, actual health care. All i've found are conveyer belts and protocol checkers.

An admin here said i wouldn't die of this and i'm doing the best I can so hopefully it all works out.

I'm having a similar issue with housing where it's like i'm too disabled to house myself but the local disability orgs are just protocol checkers who haven't actually helped yet. : (

 

[jakesmith]

i ended up canceling a general anesthesia appointment for the extractions for several reasons
1. i had never explicitly agreed to it, it was simply scheduled, i had asked for twlight instead which was declined
2. the surgeon had only spoken to me 3 minutes in a month and a half, when he did speak with me he was rude and violated personal boundaries
3. their office repeatedly threatened to cut off all care if I wanted a back and forth about anything meaningful
4. i have multiple health conditions which make GA risky
5. no antibiotic management was discussed, i was scheduled to receive an IV of one i got a rash from before
6. no anesthesiologist was assigned until night beforehand, no meaningful consult
7. my longest-standing medical issue with a contraindication with GA (dysautonomia) has never had a proper workup, trying to get it worked up at a cardiologist this month failed, they are only familiar with POTs
8. I can feel other beginning stage cavities developing just with my tongue, repeated GA is not a long term solution
9. I started feeling crummy / panic even before entering the hospital, including but nt limited to hyperventilating, nightmares, and thoughts of suicide. Wasn't convinced pre and post-op panic would be any healthier for me than a 15 minute local. So I canceled a few days befre surgery and didn't go in.

I'll now likely need to see another surgeon at some point. Local could be dangerous if I panic to much as dysautonomia + panic can spike my bp past protocol limits.

I still have no visible swelling, have been free from spontaneous pain for a while (after dropping using listerine it seems), and no fever. One of the teeth might still produce terrible pain from chewing, I dunno, because I don't chew on it.

However I am concerned that I have infections with at least intermittent abscess that I am letting run on too long, as one has been an entire year. I am basically out of oral antibiotic option, as all have adverse effects for me for some reason, and only have one reputable oral surgeon office left on my insurance out of two. But dozens of dentists available for whatever reason. I don't want to die a painful or distressing death. I also didn't want an unplanned death in the OR. I am hoping the admin is correct and I don't die from this.

 

[jakesmith]

Well good news I seem to be tolerating penicillin ok so far

 

[jakesmith]

I tolerated the penicillin for about 4 days. Longer than any so far. Stopped due to lots of coughing, mild dysphagia, and mildly itchy scalp which combined was freaking me out, and resolved upon discontinuation. Could have been somatic + reflux + dry skin at best or a delayed allergy at worst. Given that's within the typical 3-7 course I don't feel too bad about it, though I know you're supposed to finish the bottle. Random aching without pressure went away though in a tooth, which is good. I went in for an extraction Monday but came in too nervous + they were going to work on it without any discussion beforehand. Right after they sat down they were about to inject. I didn't even get to tell them no epinephrine. Also looked like they were gonna use forceps cuz that's the main tool they unpacked first... My tooth is a cavern bro that would just shatter it, I thought I was scheduled for a surgical extraction, I asked for that and they said they did it.

So I also canceled it for those reasons, no procedure was performed. Dentist spent about 2 minutes with me, just advised paying his friend in some mystery location to sedate me (I know they don't do that there), then never gave me the name of his friend, before running over to another patient. It was a scheduled procedure so I don't know why it felt like he was working on 3 other ppl at the same time. I had a lot better dentists went not on Medicaid.

Also I am well nourished, and get all the vitamins I need, except.... my diet has been near completely devoid of vitamin K, today I will order some veggies because I want to clot properly if this gets done.

Anyway I will likely see an allergist next then another dentist. I have oodles of dentists to choose from but only 2 oral surgeons on my insurance who haven't had their license temporarily revoked for accidentally killing a child (that was the third).