MCAS Myths

[PisForPerseverance]

I've found this website helpful as I've learned about mcas. I've been learning from various sources like articles written by people with mcas, doctors, doctor presentations, and from one of my doctors and will be learning from another now that I have a new doctor who treats it too. About management, precautions, treatment, relationships with other diseases. There's a lot to learn and there's a lot unknown. Often times, the best information is from what tends to happen with people with mcas from observation. Other times there's different kinds of science that's informative. And ongoing science. It is new, still, in terms of discovery, awareness, interest.

I don't necessarily endorse all this doctors views on the whole website. Dr o hara nd. She has had great improvement with her mcas.
https://mastcell360.com/debunking-mast-cell-myths
This article is by no means comprehensive in talking about causes, management, or treatment. Just discusses some misconceptions with I think some pretty good explanations, though they aren't exhaustive.

@hb8847 @katabasis @Azayliah @Kes this might be helpful

 

[MCASMike]

After the apparent histamine surge I experienced early yesterday morning, I'm wondering how many people have been diagnosed as having panic attacks by psychiatrists when in fact it was due to such a surge. Overall, my experiences since late October, 2020, suggest that what I have is not likely to be cured or prevented by one medication. The nicotinic acid seems to give me more strength/energy, but doesn't seem to do anything for the eye, sinus, and throat problems, for example. On the other hand, wearing a mask seems to help only with the eye, sinus, and throat problems.

 

[xebex]

I don’t believe panic attacks are psychological they are a nervous system response to a threat real or perceived.

 

[MCASMike]

I don’t believe panic attacks are psychological they are a nervous system response to a threat real or perceived.

Right, but to me the most interesting question is, does there need to be a histamine surge?

 

[xebex]

Right, but to me the most interesting question is, does there need to be a histamine surge?

I think a histamine surge can be one contributing factor. For example I’ve had panic attacks from probiotics, they happen in the middle of the night while I’m sleeping but I’ve never called or thought of them as an adrenaline surge they are full on terrifying “I think I’m dying call an ambulance” panic attacks. I stop the probiotics and they go away. I can’t be sure it’s the histamine in the probiotic but it is likely.

 

[PisForPerseverance]

After the apparent histamine surge I experienced early yesterday morning, I'm wondering how many people have been diagnosed as having panic attacks by psychiatrists when in fact it was due to such a surge.

I don’t believe panic attacks are psychological they are a nervous system response to a threat real or perceived.

My understanding is that all emotions and thoughts including the experience of panic involve our neurology because the nervous system is a big part of how they happen. And the rest of our biology in known and unknown ways we've barely scratched the surface on. So it's always neurological, and can have many causes involving other organs and systems too. The diagnosis of anxiety just describes the symptom, without a known cause. Unfortunately biological pathology is usually not looked for.

Panic attacks can be caused by histamine surges so I've been told and read. I've heard of anxiety getting better with mcas treatment. Anxiety is definitely one of my mcas symptoms. I mean, I also experience anxiety in different ways because of many interrelated causes.

Overall, my experiences since late October, 2020, suggest that what I have is not likely to be cured or prevented by one medication. The nicotinic acid seems to give me more strength/energy, but doesn't seem to do anything for the eye, sinus, and throat problems, for example. On the other hand, wearing a mask seems to help only with the eye, sinus, and throat problems.

Mcasmike I'm sorry about your panic attack. Do you have any doctor treatment right now? Did you take a look at that article and other parts of that website for ideas on self management besides that supplement and mask?

 

[MCASMike]

My understanding is that all emotions and thoughts including the experience of panic involve our neurology because the nervous system is a big part of how they happen. And the rest of our biology in known and unknown ways we've barely scratched the surface on. So it's always neurological, and can have many causes involving other organs and systems too. The diagnosis of anxiety just describes the symptom, without a known cause. Unfortunately biological pathology is usually not looked for.

Panic attacks can be caused by histamine surges so I've been told and read. I've heard of anxiety getting better with mcas treatment. Anxiety is definitely one of my mcas symptoms. I mean, I also experience anxiety in different ways because of many interrelated causes.



Mcasmike I'm sorry about your panic attack. Do you have any doctor treatment right now? Did you take a look at that article and other parts of that website for ideas on self management besides that supplement and mask?

I've been trying a bunch of things since late October, 2020, when I first suspected MCAS. Some worked, others didn't. I've got my symptoms fairly well controlled at this point, but I want to wean myself off of things I don't need (only the osteoporosis is unclear, but I'll be getting another DEXA scan next year). That's why I stopped the cromolyn nasal spray a few days ago and then tried less Loratidine at night. I've had adrenal surges before, when I had laryngospasms and could barely breathe, which is why I knew what was happening (along with the normal BP and high heart rate). I haven't had panic attacks, but when I had the adrenaline rush, I was thinking that someone who had the same sensations might think it's a panic attack (I thought it was funny). Coincidentally, I was watching old episdoe of "In Treatment" today (season 2, episode 9) and in it, the client describes similar physical sensations (and even says he has had them during the night). The psychiatrist, as you might expect, thinks it's psychological and doesn't even consider the possibility of adrenaline being released to deal with a histamine surge. I've seen a bunch of doctors over the years for this or that MCAS symptom, but of course they didn't know about it and were not helpful.

 

[hb8847]

Panic attacks can be caused by histamine surges so I've been told and read. I've heard of anxiety getting better with mcas treatment. Anxiety is definitely one of my mcas symptoms. I mean, I also experience anxiety in different ways because of many interrelated causes.

Yes I absolutely get panic attacks and anxiety from MCAS. In fact, I'm pretty sure whenever I get anxiety these days it is mainly if not totally as a result of MCAS - I meditate a lot and over time it's helped me to learn to notice the difference between some normal "healthy" anxiousness we experience every day and the chemically induced anxiety one feels as result of a Mast Cell trigger. And histamine is definitely one of the MCAS "chemicals" that has given me anxiety in the past so I certainly wouldn't rule it out as being the cause.

As for what one can do about it, to be honest I'm still trying to figure it out as I go. But mindfulness meditiation has been an absolute lifesaver for me - not as a cure, but as a way of calming yourself once anciety hits and learning methods of noticing it and potentially stopping it from spiraling. Once the chemical anxiety "hits" it's definitely possible that our own thinking patterns can cause that anxiety to spiral and worsen, creating a viscious cycle and resulting in things like panic attacks. Learning to notice the symptoms early and doing things like breathing exercises has helped me immeasurably.

As a last resort Benzodiazepenes have been useful for me if the anxiety becomes completely unbearable. They are also apparently a MCAS mediator so they might have a double positive effect. But they are also addictive and long term use can be harmful, so I only ever use them very occasionally, once or twice a year. But having that packet in the cabinet for a rainy day does give me peace of mind, and it absolutely works 100% of the time to completely remove anxiety, so it might be worth considering if you feel this is a problem you're really struggling to get on top of.

 

[Kes]

Thanks very much @PisForPerseverance for tagging me on that. Sorry for delay in replying, struggling quite a bit at the moment. Had a quick look. Will look more deeply..p.s. I developed a problem with my feet getting too hot about 3.5 years ago but at some point that stopped and for around a year I've struggled with my legs getting very hot. I've had to get cool get mats to put under them to cool them down before trying to sleep and I've also started using them in the day. Does that sound to you like it could be mast cell related? I just haven't had the energy to read up on it yet. My mental energy has been unbelievably low

 

[PisForPerseverance]

struggling quite a bit at the moment.

Im sorry. Me too.

I've struggled with my legs getting very hot. I've had to get cool get mats to put under them to cool them down before trying to sleep and I've also started using them in the day.

Mcas could be contributing maybe. Does anything make it better or worse. It could be a result of more than one cause, I'd also look into your peripheral nervous system and your nerves, and autonomic dysfunction I forget if you said you have that? And possible autoimmune causes of either of those (peripheral nervous system problems and autonomic dysfunction) and other possible autoimmune syndromes. Come join this thread about autoimmune causes of neurological symptoms.https://forums.phoenixrising.me/thr...et-the-care-we-need.84303/page-2#post-2346538 So far there's a post about peripheral neuropathy you could look through and maybe get some tests if you have symptoms you recognize. Do you have medical help right now? What's your access to more medical help and skilled neurological evaluations from specialists in these areas?