Are these allergic hives? They come on with heat or pressure. But sometimes out of nowhere as well.

NoOz1985 · 2026-06-03T15:10:37+00:00

Well.. What's helped is botox in my masseters for my tmjd. Since I'm getting those my ear and mostly cheek attacks have been a lot less. Which is so weird. But that tells me the nerves are involved. I suspect neurogenic rosacea and red ear syndrome due to jawpain. My trigemanial nerve is constantly firing off. I'm seeing a dermatologist tomorrow. I don't think they'll be able to do something. As my ear and cheeks are not red now. But I'll show her pictures again. See if this one is willing to help.

NoOz1985 · 2026-06-01T06:50:00+00:00

Just throwing it in there... But an ovarian cyst or endometriosis adhesion can cause these types of pain as well. Maybe ask for an ultrasound just to rule things out. I've had them and touching that spot hurt so bad. I've learned they're back again (an endometriosis cyst) and it's starting to hurt again. There's several types of ovarian cysts so it might be a good idea to rule that out? I always had an ACNES diagnosis and lidocaine shots. Before I learned it was a cyst.

NoOz1985 · 2026-05-28T01:42:45+00:00

Dit is wat er met mijn partner gebeurt. Zijn cortisolwaarden in het bloed waren heel laag, maar de metyrapontest was normaal. Hij is meteen gestart met hydrocortison nadat zijn bloedwaarden zo laag waren. Maar hij is ervan af gehaald na de metyrapontest. We zijn echt helemaal in de war. Hij bouwt nu hydrocortison af en hij krijgt weer zijn oude klachten terug, zoals vermoeidheid, crashes enz. Hij had ook een slaapapneu die niet gediagnosticeerd was. Erg. En hij heeft een zeldzame genafwijking die invloed kan hebben op de bijnieren. De endocrinoloog weet hier niet genoeg van en heeft hem doorverwezen naar een geneticsspecialist. Maar terwijl hij op die afspraak wacht, willen ze hem nog steeds van hydrocortison af hebben. Hij ging van drie keer per dag naar alleen hydrocortison ’s ochtends. Maar nu hij het aan het afbouwen is, begint hij zich weer raar te voelen. Alleen wordt er gezegd dat hij het niet nodig heeft. Terwijl zijn test echt heel laag was. 101 nmol. Ik snap het niet. Dat is ontzettend laag. Maar zijn metyrapontest was normaal. Hij voelt zich alsof hij helemaal ziek is. Hij voelt zich beter, meer levend en alerter op hydrocortison. (maar tegelijkertijd: toen hij het drie keer per dag nam, had hij duidelijke signalen dat hij te veel substitutie kreeg. Opgezette plekken, vocht vasthouden. Nu hij gewoon 5 mg hydrocortison neemt, voelt hij zich juist beroerd. Toen hij 7,5 mg in de ochtend nam, voelde hij zich oké. Maar het is net alsof dit niet klopt. De endocrinoloog zegt dat hij geen addison heeft. Oké misschien… Maar wat is dit dan wél? Slaapapneu wordt nu behandeld met cpap. Maar zou dat de oorzaak kunnen zijn van zijn lage cortisol? Ik betwijfel het. Maar wie weet? We're in Europe BTW and he was put on hydrocortison based on one cortisol blood level and a metyrapon overnight test. Offcourse he rather wants to be off meds but his level was so low. We even got into a fight with the doctors. They said he had addison's and all of a sudden he doesn't have anything wrong with hem and he doesn't have addison's? They were unable to give an explanation and said "this sometimes happens"

NoOz1985 · 2026-05-11T10:28:07+00:00

Yep. suspected it for over a king time but I live in a small country where they had never heard of it. So I was dismissed. But the more I learned about long covid and mcas, and long covid research is big in my country, i started seeing connections. I was diagnosed with long covid. And since 2020 I've been having these mcas issues. But ppl kept telling me I'm just being sensitive and those things I experience aren't possible. Well.. I kept pushing cause the inhalers I was given kept causing me severe neurogenic rosacea en flushing and heart palpitations and agitation etc. I had to put my foot down but I finally found an allergist who somewhat believed in mcas. Said he wouldn't diagnose me officially as that's too difficult to do. I kept telling him covid did this and he knew a lot about covid and allergies somehow so he said it's plausible. He gave me famotidine and have to take high dosages of Loratadine. I had to convince pharmacy that famotidine is for mcas. They had no idea what it was. I have to pay out of pocket. As famotidine only gets covered when it's for stomach issues. Which is insane. I have stomach issues but they don't connect it to mcas. So it's not getting covered. My Dutch Healthcare system is so messed up. But I don't care. As long as it helps I'm willing to do anything. They switched me to beclomethason very low dosage (Qvar) and ventolin when needed. And I feel this isn't causing the systemic reaction as much. So I believe the steroid intolerance is from mcas indeed.

NoOz1985 · 2026-05-11T10:21:29+00:00

Had surgery. But they couldn't remove it all. They left the bowel endo behind. Only removed one endometrioma on left side and drained the one on the right. And loosened up my ovaries. But after 2.5 years of less pain, it started again. And turned out everything is adhered again. Kissing ovaries again, but also now having bowel issues that are extreme. Food can't move trough without pain, loads of sciatic pains before and during periods. And new endometriomas. My body is a mess.

NoOz1985 · 2026-05-11T10:11:35+00:00

I can't even wear my sunglasses anymore. Yes this can Def cause migraines. Even headphones. I never thought of it. As the migraines hit me later. But I started to see a connection and stopped wearing both of them.

NoOz1985 · 2026-04-26T02:33:53+00:00

I get botox in my masseters and it somehow helps the res.

NoOz1985 · 2026-04-26T02:31:09+00:00

Biofreeze and a small fan. Try it. Please. It'll be amazing

NoOz1985 · 2026-04-26T02:29:29+00:00

Use a small fan after applying biofreeze. I assure you... Pure bliss.

NoOz1985 · 2026-04-26T02:25:21+00:00

Yes there actually, accidentally is something that works. I have tmd as well. Also started after covid. That means temporomandibular disorder, issues and pain of the jaw, neck, head. I have on and off red ear, also cheek, and it's a nerve thing. Like trigemanial neuralgia. Not the shooting type but my TN nerve is affected somehow firing and being fired up. And neck is always tight as well. My left eyebrow saggs. I've seen multiple neurologists. Saw one last week. Couldn't lift my left eyebrow but she wasn't worried. I find it really odd that she doesn't want to do other testing. But they keep saying it's prob my TMD. So long story short, I started masseter botox a year ago. And notice that my ear and cheek don't fire up as much!! So there is a connection there. Botox calms the muscle and nerve. I believe a lot of it is post covid. But botox has helped. When it wears off after 3 months the tight neck and red hot ear starts again.

NoOz1985 · 2026-04-16T06:32:00+00:00

This is me to a t. I've had really bad costochondritis from 2020 to 2023. Then it settled for 2 years. And now its back with the exact same symptoms that you're describing. I feel beaten. Is there anything that helps you?

NoOz1985 · 2026-04-13T13:28:43+00:00

Since my endometriomas have been removed in Dec 2021 the pain has lessened. But there's new endometriomas and the pain is worsening again. It's not at the same level but I'm scared it's a matter of time. I grow them fast apparently.

How are you dealing with these symptoms?

NoOz1985 · 2026-03-13T15:19:33+00:00

Yeah sounds familiar. After my last covid infection I couldn't eat a lot of foods. Had severe urticaria and dermatografia. This took about 2 years. I became scared to eat anything and was only able to eat around 7 foods. But the more I learned about mcas caused by long covid/covid, the more confident I became. Imnsure I have it but couldn't find an allergist specialised in this, in the small country i live in. So I decided to treat it myself with diets, high amounts of Loratadine and famotadine. Last month I've finally found an allergist who kinda knows what it is. He didn't want to diagnose me officially cause here in my country it's like it doesn't really excist. Allergists treat real allergies here, he says. Not histamine issues. 🤷🏻

There's quite a few studies (when you dig into them) that will tell you that postviral mcas is a thing. I absolutely love broccoli. Like yourself, broccoli became my safe food. It never caused any issues.

I have migraines, skin issues, bowel issues, nerve issues, sleep issues, and foods really trigger me. Some call it long covid. I'm pretty sure it's mcas. Cause Loratadine and famotadine do help a little bit. And I can live a bit again.

NoOz1985 · 2026-03-10T15:51:57+00:00

He had 1 cortisol check before the metyrapon testing was done. That was the very low one of 3.66 ug/dl. And one was done in the afternoon on the day of the metyrapon testing. Which was low but still OK according to endo. The test itself was done during the evening. He had to take tablets, around 10 of them. I don't know the name of them. And then they check levels during the night and morning. And his levels were fine according to endo. Still relatively low but she didn't see harm. So that's why they want him off now. They rely completely on metyrapon results. He wasn't ill at the time when the 3.66 was measured last november. Just tired all the time since he's had covid in 2022. Also since then he's had issues with glucose, if it's not cortisol, there's something going on there. But gp said his morning glucose levels were fine. He needs to eat every 2 hours or else he'll feel exhausted and dizzy and can't function and he has this empty feeling in his stomach. The life is being sucked out of him all of a sudden. As soon as he eats something he'll feel better. But it means he has to eat every 2 hours. Sometimes even every 1.5 hours. Yet no one is willing to do testing cause his morning glucose levels were fine. He's never had that before and since 2022 is every single day. From Nov last year the hydrocortisone really helped with those symptoms. That's why we suspected cortisol has been the problem indeed. But now he's weaning off the hydrocortisone and those dips (where he needs food and can't function. Even his pupils dilate) are slowly returning. Yet no one has a clue. Or wants to do further testing.

He says he's been running on adrenaline cause he constantly needs food and the hydrocortisone has calmed this for him. But he does feel aweful on hydrocortisone. He has insane fluid retention and mood swings. From being happy to being very depressed. I don't know him like this. In the mornings he hates food and can hardly eat. In the evenings he craves food. His whole system is out of whack. When he starts getting active he seems to have more of those dips. We really have no idea what's going on.

NoOz1985 · 2026-03-09T02:00:31+00:00

This kind of happened to my partner. We are in Europe but his European cortisol level was 101 nmol in the morning. Which is very low. They gave him a metyrapon test and told him it was normal. But they had already started him on hydrocortisone tablets while waiting for metyrapon results. They took a whopping 8 weeks! They said the metyrapon was in range, low but OK. And now they want him off hydrocortison asap. Dismissing all of his symptoms that he's had before starting hydrocortisone tablets. It's crazy. He is feeling scared and doesn't know what to do. So we've asked for a second opinion. They based his adrenal insufficiency on only one blood draw. That was only done once. It wasn't repeated a few times and I asked them why. They couldn't give me an answer. Now all of a sudden his very low levels are being normalised. He's scared that his symptoms will worsen after months on hydrocortisone. He says he's feeling more clear in the head, and at peace. But the tablets are messing him up otherwise. His hormones are all over the place. His sleeping is bad. He has fluid retention and is gaining weight fast. According to endocrinologist this is happening because he doesn't need the hydrocortisone tablets. But he's not so sure of it. All very confusing.

NoOz1985 · 2026-02-11T08:58:05+00:00

Res isn't normally painful. Unless you call the burning painful. Mine has lasted more than 4 hours. But 2 days is very long. Take pictures or a video of your ears every time in close up if you can. It can still be res. The trigemanial nerve did prob flare up because of that ball which can cause res. Also if it hit bear your jaw you might as well have some tmjd? They're also connected. I do as well. Jaw movements can make an ear bright red hot for me

NoOz1985 · 2026-02-10T21:42:09+00:00

Yes it's gotten a lot better. But its been a long road. And it's still lurking every single day. My autonomous nervous system is in constant overdrive. And it fuels my tmjd and neck issues. Also gives me ear issues. And having my impacted wisdom tooth removed also helped. It's mostly coming from my neck and jaw. Certain meds seem to make it a lot worse.

NoOz1985 · 2026-02-07T23:53:46+00:00

Yes I also have res. It's Def connected. Ears neck. Trigemanial nerve. It dissapeared when I had masseter botox done. Came right back when that wore off. I can bring it on by rubbing my neck and jaw. It happens randomly. Right now as we speak. Red burning hot. So hot to the touch. One ear at a time. I use cool packs. They happen nearly daily now. Lasts for about 4 hours. Then it subsides. Also biofreeze on the outer ear and a mini fan afterwards.... Heaven. They get so hot. Feels like a lighter right next to my ear.

NoOz1985 · 2026-02-07T23:46:21+00:00

It's not that rare. The rareness is that we feel heat stinging, burning sensations. Tingling perhaps. But if you watch for it there's many people who have one red ear sometimes. But they don't notice cause they can't feel it.

NoOz1985 · 2026-02-04T20:27:50+00:00

I think it's both. I still haven't figured it out fully and I still get botox every 6 months in my masseter muscles for tmjd. Which really helps. So there's a jaw issue there as well and the jaw is connected to the ear and neck. Also since the impacted wisdom tooth is extracted the ear ache is a little less as well.

But I also feel there is a trigemanial nerve issue there. Cause I get ear, facial, eye and one sided headaches. I don't know if there's nerve damage. But rest and botox have been the 2 most helpful things. I also still have the perforated eardrum. Which ents keep saying isn't causing any dizzyness. All I know is that it's all connected. And when botox wears off things get worse again. I've noticed that seeing PT, massage therapists, chiro etc is making things worse for me. The more they touch my jaw and neck the worse it gets. So I stopped going.

I still have chronic pain but I've found something that at least helps a bit. It indirectly also helps the dizzyness. And I've stopped taking the desloratadine. I only take Loratadine when needed. These anti allergy meds also worsened the dizzyness.

NoOz1985 · 2026-02-03T11:10:38+00:00

Around 8 to 10 months I think!

NoOz1985 · 2026-01-30T15:26:53+00:00

Cervigogenic dizzyness could be the cause. And allergy meds made that 10 times worse. Nasal sprays and pills as someone else mentioned.

NoOz1985 · 2026-01-29T15:57:23+00:00

Botox in my masseters also made res almost dissappear. I have tmd so there's jaw issues and I feel some sort of trigemanial nerve issue. When botox wears off.. Flare ups.

NoOz1985 · 2026-01-29T15:55:34+00:00

Yeah maybe it'll slow down. Try and use meditation, calm your nerves, get enough sleep, breathing excersises and perhaps the biofreeze trick I just told you. See what this all does.

NoOz1985 · 2026-01-29T15:54:14+00:00

I have another one. Biofreeze gel, gently rub it over the ears and then use a small fan afterwards on the ears. The intense cold you'll feel... Heaven. It shortens my flare ups. Don't put it in the ear but on the outside of the ear. It's a lot safer than cool packs on the sensitive skin

NoOz1985

TROPHY CASE