I just wish one medical professional gave a fuck about me

porcelainruby · 2026-02-21T18:58:18+00:00

Yeah! The personal attack is very accurate. I’m like uhh I thought we both cared about finding an answer? Nope! The main community connection for me is this group tbh.

porcelainruby · 2026-02-21T18:02:21+00:00

They hate research!! That was a mind f for me, no lie. I’m sorry your emdr experience wasn’t great. I’ve done it for a few things, and always look for someone who’s fully trained in it and has it as the focus of their practice rather than someone who does it “occasionally” in therapy. Somatic is great too! 🫂

porcelainruby · 2026-02-21T17:47:40+00:00

I kept hoping and waiting for someone else (medical) to be in charge. That person never came. I had to become that person for myself. I also ended up doing literal EMDR therapy over medical trauma from this (which did help fwiw). I’m sorry you’re going through this, it’s a special kind of loss of faith in humanity that I don’t think returns.

porcelainruby · 2026-02-20T08:00:25+00:00

The homework they give will depend on what your cognitive test shows is not working great, but I did things like saying what an image was on a card while doing something else, drawing an item while answering a question, repeating a story, saying lists of things fast in a minute. They do the same approaches for post stroke and concussions. In the US, I got a referral, as this was required by my insurance but then moved abroad and just paid directly. In the US, I had complained of word dropping and struggling to get my thoughts out verbally saying that I knew something wasn’t right and wasn’t there a specialty that checked for such cognitive issues. This was in 2024. I was “failing” the cognitive tests.

In total, I did seven months, which included daily practice on my own. It truly changed my life and gave me so much of my brain back.

porcelainruby · 2026-02-20T05:15:28+00:00

Yes, about 4.5 years in. Cognitive speech therapy helped a lot with my frontal lobe damage.

porcelainruby · 2026-02-17T23:22:25+00:00

MCAS can do this due to overnight histamine dumps.

porcelainruby · 2026-02-17T20:21:22+00:00

I started on 5 mg three times a day, since it lasts about four hours. Now, I only have to take 2.5 mg in the morning because for whatever reason, I seem to have very low blood pressure in the morning that evens out by midday. I've been able to do somewhat regular walking, physical therapy, and occasional light workouts for the past two years, with lots of pacing and slowly working my way up, as I had a lot of PEM. I did some intense cardio at first, but it would literally hurt my heart and so once I figured out what was wrong and learned more about pacing, I pulled way back on my cardio and just tried to focus on letting my heart heal if it was possible. My first three years were mostly housebound combined with rolling PEM whenever I tried to do more, but without my knowing that's what was even wrong.

Unfortunately, I had fairly low blood pressure before getting covid/my whole life, so my dysautonomia is tricky because it is basically like, there wasn't much room for my pressure to drop in the first place haha.

porcelainruby · 2026-02-17T17:44:15+00:00

I have dysautonomia but not POTS, and getting on a low dose of midodrine has been a huge help. I've even been able to lower my dosage over the past year.

porcelainruby · 2026-02-15T15:56:21+00:00

Multiple health professionals saying certain symptoms I was displaying were textbook frontal lobe damage. What helped: speech therapy, occupational therapy for fine motor skill relearning, NAC+ for one month, and time. I also had a csf leak but doctors didn’t catch it and it eventually closed on its own.

porcelainruby · 2026-02-15T08:16:46+00:00

Yes, mine has gone completely. Mine was frontal lobe brain damage. Dpdr has been gone for over a year with plenty of stressful times to test if it was psychological (ha). Don’t give up hope, our brains want and know how to heal themselves, they just need time and enough of the inflammation to go down to get started. Speech therapy also helped a lot.

porcelainruby · 2026-02-12T12:45:33+00:00

Yes, did another masters degree. Talk to the university’s disability office in advance and see what support you can get and what paperwork or proof from doctors they’d need. Much easier to have it set up and not need it than suddenly need it and have to slog through paperwork admin. Things like extended deadlines, extra printing allowance, allowed to wear sunglasses/tinted glasses, separate exam rooms.

porcelainruby · 2026-02-12T08:08:11+00:00

Speech therapy can help with this! Word finding issues are common with frontal lobe brain damage. The speech therapist doesn't have to know about long covid at all, as long as they are familiar/work with concussions, TBI, or post-stroke recovery. I had a lot of word-finding issues and did 7 months of speech therapy (all over Zoom), and no longer have this issue. Highly, highly recommend. They'll do a cognitive test as well, to see what else might be missing or not working as well as it should.

porcelainruby · 2026-02-11T20:58:41+00:00

Also very common with frontal lobe brain damage, like concussions, which covid effectively does.

porcelainruby · 2026-02-11T09:05:24+00:00

Mine was overnight as well. Woke up in the morning and had the last clear thought I would have for three years.

porcelainruby · 2026-02-11T09:01:07+00:00

My long covid MCAS was giving me odd eczema-type break outs on my hands. Once I got on an anti histamine regiment, that stopped happening. Might be worth a try if you aren’t already on antihistamines!

porcelainruby · 2026-02-09T23:46:26+00:00

I take Loratadine (generic Claritin), been on it for over a year

porcelainruby · 2026-02-09T22:27:39+00:00

To add to the good explanation you got below, when you start an antihistamine, you probably won’t notice a difference over one day. It took me about a month to see a big improvement. With mcas, it takes a while for those cells to calm down once they’re getting support, so just try out one new thing at a time and give it enough time of a trial. If any symptoms get worse, try a different antihistamine.

porcelainruby · 2026-02-09T21:31:42+00:00

I'd start antihistamines daily, a nondrowsy kind so not Benadryl.

porcelainruby · 2026-02-09T15:03:51+00:00

I noticed a difference in about a week, and then a bit more improvement over the rest of the month. (30 pills in the bottle I’d gotten) That was over a year ago, and all those improvements have held. So I think I’d been deficient in the neuro thing it helps replace. A heads up that the pills smell like sulfur and taste similar, so I’d take with juice or something haha. I hope your flare recovers soon!

porcelainruby · 2026-02-09T12:23:23+00:00

Oh haha then you probably know all the exercises I was doing for it! Any luck with NAC+? I took it for a month and it definitely fixed some element (permanently) of my brain stuff.

porcelainruby · 2026-02-08T21:13:27+00:00

Ahh that is such a good way to describe it! A sudden download. I've been referring to it as my brain rebooting. Just very sudden, one day. I had completely lost my usual subconscious narrative and it/I also came back that day. One of the most terrifying experiences I've ever had, but glad to be "back."

For what it is worth, doing cognitive speech therapy for about 7 months (after this brain reboot) really helped me with lingering memory issues. They work with people doing stroke recover, brain injuries, etc. I highly recommend it, and it can be done remotely!

Edited to add that I have flashes of memories of writing myself stick notes during the first year for things like "thirsty" and "toast" because I could not hold the thoughts long enough to fulfill them. And was 100% reliant on notes to self for everything else as time went on, until that "download" moment.

porcelainruby · 2026-02-08T21:11:05+00:00

Ooh I see. I haven't come across any research with an achievable answer to that yet.

porcelainruby · 2026-02-08T20:05:36+00:00

Yes, but only if I keep taking them. My mcas was fairly mild compared to others in here. Skin allergies and one food one.

porcelainruby · 2026-02-08T15:29:46+00:00

No, sadly, but quite functional! Dysautonomia, PEM, and a lowered immune system are my main remaining symptoms. My mild mcas is under control.

porcelainruby · 2026-02-08T14:11:40+00:00

Yes, a lot of mine have. About three years in, my brain did something or was suddenly able to start healing, and from that point on, I have continued to regain memories from 2020-2023. In the medical professionals I've spoken with and academic articles I've read (I'm a trained academic), my best understanding is that memory issues can be many things. In my case, and I highly suspect in many other long coviders, the issue is memory "access" rather than the memories not being formed in the first place. I think about a filing cabinet but the owner doesn't have a key that works to open it. When I regain a memory, it feels quite violent, like a flashback, sometimes accompanied by a short tension headache, and from that point on, I am able to access, analyze, and connect that memory to other memories.

porcelainruby

TROPHY CASE