MTRJ75

This nose running thing has become a constant.  

Eating...nose runs. 

Walking around...nose runs.

Concentrating on something difficult...nose runs. 

Talking on the phone...nose runs. 

Basically anytime I sweat...nose runs.

Maybe a mold thing? Some MCAS connection? 

Study almost two years old, but I don't think I've heard this term before: 

https://pubmed.ncbi.nlm.nih.gov/32171889/

We've talked a bit about it here: 

I've since been searching for something of a histamine diet template. More what TO eat than what to avoid. Think I may have finally stumbled on something useful. The author is a naturopath selling a service on their site, but hopeful these blog posts will be able to stay because I think they give us something of an MCAS template for free:

Food list with some recipe ideas

https://mastcell360.com/low-histamine-foods-list/

Encouraging. Congrats. Keep it up. 

Yes, although my neuro has never mentioned it as a possibility. 

24 minutes ago, radiohfan23 said:

Hey! I'd avoid fish, meat, dairy leftovers for sure. But honestly, adding some Vit C, the 5HTP/ L Tyrosine and especially the pea sprouts (I also use a pea protein powder for breakfast and sometimes at night) has worked well for me. It's not eliminated the problem, but I've got enough daylight to work with now. And it's all cheap and easy to make. Definitely try the pea sprouts over the pill DAO. I don't think the supplements do much, but the sprouts help a lot. And they're just generally good for you. 

I've focused on doing the simple changes and avoided not getting too bogged down. I run into that problem all the time.

Thanks. Good stuff. 

But again, my diet is becoming so restrictive, I'm hoping to find what TO eat rather than what to avoid. Might be a shorter list. 

So, I frequently get broccoli sprouts from Whole Foods. Seems they are just as high in DAO according to Dr. Google. While that's a positive, I guess the negative might be that they haven't really helped yet, unless I'm just not eating enough. 

The freezing leftovers thing is a good idea, though many things don't freeze as well as others @Pistol

7 hours ago, MikeO said:

This is a little frustrating for me just for the fact when i google low histamine diets nothing seems to come back consistently as to what is what. Still considering going in to see a dietician.   

I'm finding the same. There doesn't seem to be universal agreement. 

Tomatoes are already out on the AIP diet (nightshades). 

The problem with never having leftovers around is that on days I'm not moving around well I either don't eat or only have very poor choices available. 

I've bookmarked this post and keep coming back to it because I feel like there's some sort of roadmap here. You're journey sounds just like mine (and probably most others here) except for the healing part. I think I'm ready to undertake a low histamine diet and I'm going to start looking into DAO enzymes and ways to boost them. 

The problem I'm having, already being AIP Paleo, is that a LHD would severely tighten up my diet even more. Does anyone have a template or meal plan. Or even list of foods that I CAN eat because most things seem to be off the table.

Is it true that you can't eat leftovers on a LHD? I read something about the bacteria buildup in leftovers increase histamines. I rely on leftovers for half my meals. I'm in no condition to be making fresh meals every single day. 

I'm extremely frustrated. Even when I feel like I can get up and do a few things, my muscles SCREAM at me and absolutely light up my fight or flight reaction as soon as I sit back down. Why is my vision blurring after minimal physical activity? It's like my body is going into shock from any muscle usage. Is this the sign of some kind of muscle or nerve damage? I mean I can get up and do a few pushups if I need to, but the aftermath is agony once I sit down again. I'm still sweating an hour later. 

Yes. I may have even posted here a couple of years ago. It was called an Ampcoil. It's a donut shaped piece of metal or whatever that you place somewhere on your body and, well, I don't know what happens after that. I had actually purchased 5 sessions at a discount of $90 per in March of 2020 and still had one remaining when COVID shut everything down. 

I think it actually helped. That was one of my better (best?) months. However, it's very expensive and has to be kept up continuously or the benefit kinda fades. 

This is the reason my cardiologist has me continuing Propranolol along with Ivabradine. The latter has been better for my palpitations, but the former helps with high blood pressure. She's hesitant to put me on any additional BP medication because I'm already dealing with severe muscle aches and exhaustion. 

That's another concerning theory I'd read before. Are ablations still contraindicated for the Afib if the person also has dysautonomia? 

Sounds like a terrible ordeal. Glad you seem to be handling it calmly enough. 

51 minutes ago, Sushi said:

I don’t think that the ‘good’ brain training programs are suggesting that you ignore symptoms and not take any medical action possible to deal with them, but rather to reframe your response to troubling symptoms as they arise, moving your response from ‘OMG I am in real trouble here—once again,’ to ‘okay, this is happening, what is the best way to deal with it?’ The idea seems to not set off the alarm bells in the sympathetic NS. So, say I start to pass out—rather than reacting with ‘ Yikes, I am in big trouble!’ I might rather go with, ‘Oops, I stood up too long again. I’ll just sit/lie down and drink electrolytes/take a med (or whatever) and try to remember not stand up so long and be more aware when subtle symptoms arise.’

It is weird but I seem to have tamped down my response to what feels like (and may be) medical emergencies to a sort of pragmatic response. Last week I had complete heart block (the signal for the heart to beat was completely blocked). I sent my electrophysiologist a Kardia Mobile generated ECG and she emailed back immediately asking me to come right in. I was really dizzy and short of breath so a friend brought me in—but amazingly, though I recognized that this was a very serious symptom, panic didn’t kick in. Luckily I have a pacemaker that MY EP could read and see what was happening. It had been caused by a drug that I had taken for years. Even when I was told what was happening my response was still surprisingly pragmatic: ‘What are we going to do about this.’ I was actually surprised that  the OMG response never arose.

Yes and that's the part of the program that's helped me. It's obviously much more than that. But it's not going to stop a chronic autoimmune process. 

That is really scary. This can happen w/ dysautonomia or was it just specifically a medication that caused it? This is obviously the biggest fear with PVCs is that the entire signal gets stopped. 

I agree @Sushi

A big part of a lot of those programs is to convince yourself that you're already better and try to pay as little attention to symptoms as possible after you do what you can. It's helped my reaction to certain symptoms so as not to make them worse and I think it's sometimes helped me recover a bit more quickly, but I still have a question that never gets addressed. 

What if the problem is autoimmune in nature. If autoantibodies are attacking your neuroreceptors and not just destroying them, but causing them to act erroneously, as theorized, don't you have to stop that before you can truly heal? 

To add: It really messes with your mind too because you're always on the lookout for something I think. 

May have had this discussion somewhere else recently and I think it may have been Pistol, but sometimes, when there's an actual sickness or event, some of the other symptoms recede into the background because your brain is focused on something else at the moment and forgets to mess some other stuff up. 

I'm trying to explain to a friend why I can't do something with them today even though I have nothing to do and haven't seen them in a number of years. It's like....

So I feel like I've had a few beers with a bit of a buzz, but you ever had an old car that kinda shakes in the cold? But also kinda like I'm dropping on a roller coaster. And that feeling you get when you stand up from lying down too quick. Also, you know the way you pick up a cat from the back of their neck, I feel like someone's gripping me like that. And my vision blurs in the sunlight. But I'm just on the edge of exhaustion too. 

It's not that all these things are awful right now and it'll probably be different later, but they all feel like they could tip with the right nudge. 

BUT I'm feeling a lot better now than I was...really. 

When I have my 3 month neuro or cardio checkups and the assistant comes into the room before the doctor to take notes on symptoms, I just laugh. I don't know what to say. 

A heaviness and deep ache that goes down through the muscles near my shoulders. And I'm always very painfully pulling muscles in the neck/shoulder area when stretching for something, but I don't know that I'd call it a weakness. The tightness makes a lot of sense though. I've read that more energy is needed to relax a muscle than tense it up and if energy production is a problem...

They (Rutgers) did their own bloodwork. Very comprehensive, for autoimmune. 

I don't think there are many doctors who know how to effectively treat or even diagnose MCAS yet. I can't wait to hear about people who find stuff that works. 

That's so strange. 

Yes, UCTD or MCTD are phrases I've heard doctors mention before when dealing w/ me. I guess it's another way of saying seronegative autoimmune. 

I've been to two rheumys without any stand out blood work. Including one at a big university. The last one said in no uncertain terms...there's nothing rheumatology can do for you w/o bloodwork. Don't come back. 

I am planning on looking more into IVIG type treatments, though I don't imagine insurance will improve such a thing. 

I've long suspected all of this is autoimmune, but never thought RA. The burning is more of a sunburn feeling just below the surface. The ache and exhaustion are worse. I don't have any join pain or swelling at all. 

I'm guessing the MCAS is really contributing to this constant nausea and loss of appetite that go along with always being congested or runny. I don't know what else to suggest though. Please let me know if Vandy figures out a way to properly deal with the MCAS @KiminOrlandobecause I still feel this is the key to functionality again for me.  

It's not a flare thing for me. It's just something I often overlooked due to worse symptoms, although it is sometimes worse than at others. Wasn't sure if it was a POTS thing or something else though because I couldn't tie it to any blood flow issues, so interesting (but sad) to hear that other POTS sufferers experience this. Thank you. 

It really hit me how bad this is and how much it's holding me back when I mentioned to a friend I hadn't seen in a few years that I'd been doing better and they suggested meeting for lunch or drinks. I then realized how much farther I still have to go to get to that stage.

Internal tremors for me are more like a vibration, like an old car in the winter. 

Bounding/pounding pulse is more like lying on top of loud musical instrument (drum or base). Evenly paced and often much slower than tremor vibrations. 

I can feel a bounding pulse in my back if I'm lying down. It's like it's making my body bounce or more. Internal tremors are just mostly in my chest area. 

Lately, the burning, aching exhaustion has been my worst symptom. Not sure if that's a bad thing or not because the heart palpitation stuff, the crazy adrenaline ups and downs, the stuff that sends you to the ER, has been a bit better. Although, the worse the aching exhaustion is, the worse I get the sweats and flight or fight symptoms with just the movement of a few muscles. It's been so bad the last couple of weeks that I'm having a lot of trouble getting out of bed and it's not subsiding much until very late in the day when it's time to go to bed again. 

Is this a normal part of POTS or more a different neuropathy type thing? CBD oil has helped with muscle aches in the past and I've been on LDN for about 6 months now, which I thought was helping with some of the inflammatory aches and pains. 

I've been trying to do some very light exercising lately, but this, of course, makes it much worse. I see the neuro on Thursday (2/17). Any thoughts? 

(Also still really struggling with allergy - MCAS?? - symptoms despite being on an H1, H2 and mast cell stabilizer for about 6 months too. Wonder if there's a connection there.)