u/East_Wheel1

My most consistent symptom seems to be lip swelling. It's mainly my bottom lip and it can swell over 3x it's size if it flares badly. If I'm lucky I get to spend 30 minutes a day with relatively normal sized lips but basically any slight trigger and they swell again. When they swell, it's usually accompanied by peeling, redness, and general dryness and cracking. These days I've also noticed a lot of spasms in my lip, mainly when it's having a reaction.

Some of the triggers include:

- Opening my mouth/talking

- drinking/swishing/gargling water (I've tried every possible type of water)

- eating almost any food (even if the food doesn't touch my lips)

- putting on vaseline or literally any lip product except for argan oil which is mostly fine.

- brushing teeth (even with just water)

- bright lights

- anything that flares migraine, dysautonomia, gut issues, etc.

-any allergen in the air (pet dander, dust, etc.)

Often times it feels like my body isn't in much of a systemic flare-up but my bottom lip is still swollen. I'm wondering if other people can relate to this and hopefully someone has some advice or information. I've had a dry lip problem for many years but the swelling has kind of just gotten worse and more sensitive with time.

This may be common knowledge but I'd like to share that I've found huge benefit by managing my dysautonomia. Any time my dysautonomia is bad, I'm basically guaranteed to have MCAS issues.

For me this looks like:

-starting my day with midodrine, salt pills, and a glass of electrolyte water immediately when I first wake up.

-staying laying down and flexing and moving legs, feet, and calves for 5 minutes before sitting up

-sitting up and moving and flexing the rest of my body for 5 minutes

-compression socks, abdominal compression as soon as I get out of bed

-if possible, staying in bed longer to read or just stay calm for 30-60 min

-when eating breakfast, I've found that posture and speed matter, but most of all I find that it's important to have low fat and avoid too many carbs. Carbs is a common issue for dysautonomia but I find high fat meals will often cause a much more severe reaction that lasts longer. Regardless, it's also very helpful to stay seated or reclined for some time after eating. For me it's 60 min. If I respect my breakfast protocols, it's much easier for me to handle other meals later in the day.

-taking another salt pill about every hour and consistently drinking electrolyte water

I know this is basic advice for dysautonomia patients but I imagine some people in this subreddit may not be full informed or even aware that they have dysautonomia (I knew I had MCAS long before I realized the extent of my dysautonomia). If I can manage the first half of the day properly (or even the first couple hours), it can completely change how I function for the rest of the day. Otherwise I find it's a domino effect.

EDIT: I'd also like to add that you can save a ton of money by buying your own empty capsules (I use size 00 which holds about 1/4 tsp of salt I think) and filling them with salt yourself. I use something called "the capsule machine" which speeds up the process. Just be careful about chlorine levels in your blood if you consume a lot of salt.

Constant Shifting between Low Pressure and High Pressure in head

Hey, I've been diagnosed with CCI. I also have dysautonomia and MCAS. I find that my symptoms generally cycle between 2 different states.

1. High Pressure

\- more intense migraines

\- severe pressure and head pain when supine

\- constant pressure behind eyes (and more pain from light, reading, etc.)

\- easier to stay upright (in comparison to the low pressure state)

\- more MCAS reactivity

\- more painful to think or communicate

\- higher anxiety and OCD-like symptoms

\- easily overheating, especially when supine

2. Low Pressure

\- less intense migraines

\- can't stay upright long

\- feels like my head is empty/draining into my body

\- severe weakness in whole body

\- symptoms improve when supine

\- less energy overall but also less anxiety and more depression-like symptoms

\-body tends to be extremely cold

It seems to be around 2-4 days that I spend in each state and then it shifts to the other. I have suspected a CSF leak and I know that these symptoms may line up with the newly proposed "spikey-leaky syndrome" but I also know some of the symptoms could be explained by cerebral perfusion rather than CSF flow (although I know both are related). I have had some imaging done that has shown no indication of intracranial hypertension or hypotension and although I know those tests aren't definitive, I want to be clear that I'm describing how things feel rather than actually have proof of "high pressure" or "low pressure" in regards to either state.

Would really appreciate any opinions or knowledge in regards to my situation. Curious if others have dealt with this.