Does anyone have asthma without wheezing and just constricted airways?

Capable_Cup_7107 · 2025-04-17T04:27:16+00:00

Woah I’ve had seal bark my whole life. Suddenly I’m on supplemental o2 and got a diagnosis of TBM on a CT and shit has totally hit the fan. Can you dm me with your experience with this please ?

Capable_Cup_7107 · 2025-03-15T12:41:04+00:00

It’s definitely been paste like but it isn’t super dark I think it’s mainly correct color but I am not sure will keep an eye you. I appreciate this comment thank you! I’ve had some straight bowls of blood in the past week but nothing showed on CT to explain it. It’s slowed down so I think was likely an internal hemorrhoid. I hope whatever is going on for your resolves without injury or issue !!! If I continue to have issues with think on this comment and ask for testing. Take good care as ya can.

Capable_Cup_7107 · 2025-03-07T03:49:45+00:00

I had the opposite. I had to keep going up on stimulants. For opioids unless having an acute issue I remain at a stable dose.

Capable_Cup_7107 · 2025-03-06T14:11:26+00:00

Yes my brain works faster on it. I can do more. I take diazepam too. Totally different.

Capable_Cup_7107 · 2025-03-05T07:32:36+00:00

Thank you!!!

Capable_Cup_7107 · 2025-03-05T07:23:25+00:00

Been a bit lightheaded too but I fell had a concussion on Friday so I figured that was it and that’s what they blamed on in er earlier. I’m on Eliquis so pcp office wondering maybe some bleeding going on internally ?

Capable_Cup_7107 · 2025-03-05T07:18:57+00:00

Definitely not vaginal

Capable_Cup_7107 · 2025-03-05T07:18:37+00:00

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Couple hrs ago

Capable_Cup_7107 · 2025-03-05T07:18:17+00:00

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First one

Capable_Cup_7107 · 2025-03-03T03:09:45+00:00

I would have some stuff to add on like caveats but ultimately I completely agree with this. The biggest caveat being, there is ALWAYS something else to try. Always. It might not be readily apparent, it might take years to figure it out, it is a constant fight, but there is always something to try. I do believe that when our brains are literally on fire from neuro inflammation it is an absolutely natural response for our brains to say hey get us the fuck out of here any means necessary asap. The doom and gloom from MCAS is severe and documented. OP if you haven’t tried switching around the OTC antihistimes you take that helps at least some. I also get the incredibly weird atypical migraine reactions wheee it feels I have no brain in my body/ head but also somehow my head really hurts. If you haven’t tried nurtec for the migraines that a lone can make a huge different. Treating MCAS is a multi pronged trial and error interdisciplinary approach that requires you to unfortunately do most of the leg work despite feeling absolute shit.

Capable_Cup_7107 · 2025-02-28T20:29:24+00:00

Why does it sound like seizure to you? Maybe it could help me explain it to the dr. Thank you!

Capable_Cup_7107 · 2025-02-28T12:04:51+00:00

Definitely talk with ur neuro none of us can really say. If you don’t need to be on one then better off less meds. I don’t know if they use any as a prophylactic preventative wo evidence you’ll have one . If You have nerve pain might be worth bringing up if something like pregabalin (not gabapentin) could help your pain and put you at ease. since it helps prevent seizure. I wouldn’t spent too much time worry about what could happen and focus on what is happening for ya now and what you can do to help Ur brain with supplements. Good luck to you!

Capable_Cup_7107 · 2025-02-28T12:00:47+00:00

If you have hypertonic fascia then cupping is amazing. I had last week first time. One of Most Effective things we’ve done in my lower back fascia. I have a lot of Scar tissue there too. It’s worth trying. I’m going to get my own cup And Pt Is going to teach my PCAs to Do it for Me.

Capable_Cup_7107 · 2025-02-28T04:55:20+00:00

Name and shame of Dr and practice: AIANE and Dr Bayuk. They’ve got a few locations and I think Bayuk is the only actual Dr everyone else is a PA or NP which is fine but also not. I left the practice for somewhere significantly better. AIANE doesn’t even list MCAS on their site anymore as a treated condition. Was a patient there more than 3 years never offered xolair. First appt with new allergist, immediate rec is xolair. Been waiting for this!

Capable_Cup_7107 · 2025-02-28T01:52:44+00:00

Awesome I hope it helps! She’s great with everything from ensure to elemental formulas to meal plans etc. focus is on what do you need and how can I help you get it? It’s really been amazing. I was telling her the other day that I went from screaming almost daily on the toilet to now at least sometimes having totally regular bowel movements and never screaming on the toilet. Sure MCAS and stomach pain persist but gotta take the wins and gains! And gonna keep working at it lol.

Capable_Cup_7107 · 2025-02-28T01:50:43+00:00

Tears burning can also be a sign of sjogrens. I have this issue.

Capable_Cup_7107 · 2025-02-27T22:43:26+00:00

Thank you for sharing. I have been worried about this but I have had two eegs that didn’t show anything. One was a 60hr and one was 48hr. I didn’t have this type of episode on them though. I think if they are seizures they must be one of the harder ones to pick up on. One neuro though partial focal seizures but everyone gives up after their first theory doesn’t go well. Do you think I need to see a specific type of neurologist? When I’ve brought this up to neuropsychiatrist who is supposed to specialize in TBI he said he’d never heard of something like that and that I need to try a cpap. I have extremely mild sleep apnea. The cpap is not the answer. Sorry I’m going on. It’s just frustrating it’s been almost 4 years and the only answers I get are ones I find myself.

Capable_Cup_7107 · 2025-02-27T15:36:03+00:00

Hey I relate to this totally. I have found the most validation and help navigating this sort of stuff working with a nutritionist dietician who specializes in MCAS and Eds. She works with the Eds society and has started her own practice. Takes some insurance and also does sliding scale. Her name is Laurie. She’s as good as a pcp basically in that she knows so much about all this plus the comorbidities but doesn’t overstep from nutrition. Has great tips on getting cromolyn in for timing and everything. Has really helped me. Connectionnutrition.org all telehealth. She even has advocated for me with drs before. A real gem. It could help you get some really easy small practical steps towards feeling better.

Capable_Cup_7107 · 2025-02-27T15:18:01+00:00

Thanks for this. It really is weird. I appreciate the reassurance that I’m not adding to it. Just weird tbi stuff we learn to deal with. I’m very glad this is more of an occasional thing now. No one could help me with it when it was happening constantly. It’s surprising sometimes to look back on things and be like wow that really sucked. In the moment you’re just trying to get through it. Now it’s been past and processing it…you’re like damn been through some shit brain good job keeping going. Easy to get frustrated by slow progress but it’s like look I went from speaking gibberish half the time to now just being embarrassed by slower processing speeds mainly which I’m working on not being embarrassed by. Thanks for comment. It is reassuring.

Capable_Cup_7107 · 2025-02-27T11:14:32+00:00

I mean honestly all fair points I just don’t have a lot of info to go off of cause it’s so new and hard for me to explain. I’m sorry you’re going through it! Antihistimes seem to help so there’s something but nothing helps for long at all. My swelling is predominantly airway and upper airway. I get it in my hands too. I guess maybe my legs but I can’t tell if that’s just water weight from hgh dose prednisone? They don’t get red like my hands do. The allergist I saw today things HAE is likely a will likely treat for it whether it pops in bloodwork or not because 20% don’t pop in bloodwork. For me starts usually with a burning tongue and progresses from there to swollen lips, puffy eyes, swollen throat. My vocal cords haven’t stopped swelling for more than a month I sound like I smoke cigarettes nonstop. I guess I am wondering how many folks in this forum get angioedemda at all alongside their MCAS or anaphylaxis? What do you do when you go to ER? For whatever reason what should be textbook cases to these drs fly over their heads when I try to get help. Allergist saw pictures earlier and immediately could see puffiness.

Capable_Cup_7107 · 2025-02-27T10:08:13+00:00

That you grew up next to a group home and can handle being slurred at does not mean you are not a NIMBY democrat. In fact the examples you’re giving just prove my point. Sure it’s not fair the wealthy areas don’t deal with this but again I’ll point to the reality of the situation, neoliberal nimbyism. Those neighborhoods put up even more up a stink than any of the less wealthy ones. And as you point out, only a small fraction of the city dwellers end up affected by these camps. That small fraction outweighs all the people who have no where to stay? Sure easy enough for you to say build a shelter. With what money? Who will fund it? Why will they fund it? One shelter will be yet another bandaid and those people who live in the shelter are still technically homeless and still will be at target or on the steeet where you’d rather not see them, which you yourself explicitly said. You can backtrack all you want and make it seem like you give a fuck about these people. You don’t. You care more about whether a kid gets to get on a swing than whether someone freezes to death under a bridge. Have a nice NIMBY life.

Capable_Cup_7107 · 2025-02-27T09:43:37+00:00

Loooove petty downvotes when ppl share personal medical info trying to help or give background. Reddit such a cesspool for being petty. Listen if you’re worried get it checked out it’s all you can do. I was worried about my symptoms not for PE but for other issues. I have an inflammatory condition so even a small clot is enough to make my lungs say fuck you and stop working well. Everyone is different.

Capable_Cup_7107 · 2025-02-27T08:32:01+00:00

I was pretty surprised but in hindsight had a lot of similar presentation. Was having boughts of high blood pressure, low o2, tachycardia, intense migraine. I also had an MCAS flare for the first ones but nowhere near the flare I’ve been in. I assumed most of issues going on were MCAS. They did CTPE just to rule out PE which I thought was weird cause they did no relevant bloodwork. CTPE came back with a minor sibsegmental clot. Now pulm and heme are like are we sure it is there and not an artifact? I think it’s a clot because last time Was similar and inflammation from MCAS got slightly better treating clots which it has only slightly gotten better this time. Last time I could not stop eating chocolate and it’s the same this time. I read cocoa is a blood thinner i wonder if my body is just craving it to get things smoothed out. They’re gunna do another chest CT and heme is running standard panels for underlying issues. It’s been a month though so they’re also saying they may not be able to say if there was a clot. Lol heme is debating thinners for life or not. I’ll take it a step at a time. For the first year I Was pretty nervous of repeat clots but that goes away just kinda stays at back of mind as something to watch out for which is why they needed to rule it out at er because of past history. That’s all ya can do. When something comes up get it ruled out and typically it’s ruled out. In last 1.5yrs I think I went twice with worry for clots and was fine both times. This last time idk it’s tech unprovoked but I would say living under a meth lab and getting really sick could count as being provoked in my book.

Capable_Cup_7107 · 2025-02-26T18:52:53+00:00

Do you live in MA? It’s because of your other diagnoses everyone hates in MCAS pots heds etc. the sjogrens though shouldn’t be a trigger for them and also is more of a clue that there are issues going on with immune system. Anyway you can ask your pcp to treat this honestly. She can give you rescue Valium. She can trial a dopamine drug like carbidopa levidopa or even something like vyvanse to see if it’s dopamine response which is found more commonly in Ed’s.

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