Mast Cell Activation Disorder

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"I'm So Sorry You Have To Deal With That"

Not too long ago one of my doctors wanted to make an adjustment to the dosage of one of the meds I take for #PosturalOrthostaticTachycardiaSyndrome .

It went very poorly.

Anyway, I had to control my symptoms fairly publicly one day. I even sat out in the rain for a bit to help with self-regulation. I was barefoot, without a jacket, and it was maybe in the 40s, but my CNS did not care about facts at that moment.

So I ended up sharing about my chronic illness with a few new people after that.

After my follow-up w/ cardio, we determined that I'd be staying at my usual dosage. From there, I let myself get back up to maybe 75% baseline functioning and then basically put it out of mind. Since I was just returning to a prior dose, I figured the rest would come.

I saw one of the people who had recently found out about my diagnosis, and she asked for an update. It took me a second to figure out what she was talking about, having already filed it away in my mind, but I brought my brain up to speed to have the conversation.

I have different levels of routine answers about my medical issues depending on how much the person asking really cares to listen/ is actually asking.

I ended up explaining how POTS was actually one of a system of medical issues I have stemming from a genetic condition #EhlersDanlosSyndrome .

It was then that she said she was sorry I had to deal with things like that, and I genuinely had to sit back and think what that meant.

"Things Like That".

I then was probably more honest than I needed to be with her, and more honest than I usually am, with general intro conversation about my 'genetic stuff, but I was talking as I was processing... ' [Especially because I saw her tear up while I was saying it- whoops]

I told her I have no concept of what it is like not to be dealing with it. I don't know what it is like to not be in pain. I don't know what it would be like not to be thinking about when to take my next medication or what my water intake is. I don't know what it is like to go more than a week or two without seeing a doctor. I just have never had that room empty, and I can't comprehend what it would be like to have that space.

#ADHD #Asthma #ObsessiveCompulsiveDisorder #PTSD #Depression #MastCellActivationDisorder #Migraine #ChronicVestibularMigraine

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I'm new here!

Hi, my name is Botsy1977. I'm here because im in the process of being diagnosed with MCAS. Im struggling to take it all i and looking to get support from others

#MightyTogether

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College and Chronic Illness

Hey guys! I am currently new to the Mighty as I was just looking for some helpful tips in managing chronic illness. I am a freshman at the University of Florida and am really struggling with managing both college and chronic illness! Any tips would be amazing!!!#PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #Migraine #ChronicIllness

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I'm new here!

Hi, my name is SaltAire777. I'm here because I have MCAS systems and seeing an immunologist who is treating me for low level MCAS but hasn't given that diagnosis yet.

#MightyTogether

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I'm new here!

Hi! I’m Ashley and am new here! I suffer from severe mental health and physical health issues. I am excited to have joined this platform and officially be an “Mighty” lol. I’m pretty unfamiliar with this app/website but I am super hyped to learn the different things to do on here! Because I’m just getting started, does anyone have any tips, some cool things you can do on The Mighty and if you’re a fellow spoonie/dealing with similar issues I do too? Maybe I can make some friends that truly get these struggles…because we all know that nobody gets it like the ones that live it…aka US. I look forward to meeting any future friends!! Again please reply with any helpful information or to let me know of others on here dealing with the same things please!♡

#MightyTogether #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #ADHD #OCD #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #MastCellActivationDisorder #Gastroparesis #Dysautonomia #OrthostaticHypotension #ChronicPain #ChronicIllness #ChronicOrthostaticIntolerance #ChronicFatigueSyndrome #Migraine #Insomnia #Psychosis #PanicAttack #PanicDisorder

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New Here

Hello. I'm new to this group and this platform in general. I have suspected MCAS either on its own or caused/exacerbated by mold toxicity. Last time my doc put me on a detox protocol I got so much worse and wasn't able to handle it so I had to stop. Now I'm in the middle of a severe depression and feel no motivation toward anything anymore. I'm trying a new tricyclic antidepressant that is suggested by the research to be preferable for MCAS than typical SSRIs I've taken for years. I'm slowly going up in dose but so far not feeling any improvement and feeling pretty scared. Does anyone have any experience with this or anything else they could share?

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Hi! I'm new here. Just need a place to tell my story, and perhaps get some necessary help.

This morning I woke up with the migraine again, this is now day 6, off and on, but mostly on. I go through phases like this, where it seems I cannot escape the pain, then they might suddenly improve drastically, down to once or twice a week, and back again. The right side of my forehead feels like my skull is going to explode right off, or my brain is going to come through my temple, and the back of my neck, at the very point where it connects to the skull feels like I'm being stabbed with an icepick. This is the same pain as always, it rarely varies, and causes nausea, extreme light sensitivity and pressure behind the eyes like they want to just pop right out of there, and the dreaded panic attacks. No medicine the neurologist has tried helps to prevent them, but thankfully, the triptans prescribed do give me temporary relief. I've had multiple CT scans, MRI scans, X-rays, and blood tests. The only thing that showed up is rather severe arthritis in my neck. I also suffer from rather extreme allergies, meniere's disease, interstitial cystitis (under control), and asthma. I believe it is likely that I have mast cell activation syndrome, but have not as of yet found a doctor who is able to assess me, here on the outskirts of Atlanta. That pretty much covers the physical. The mental impacts of all of this can be quite a bundle as well, as I'm sure you folks understand. Today is a rough day, but I'll get through it. Thanks for listening.

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How Did You Break Away from the Pain and Really Live!?!

Prisoner to pain that is constant and keeps me unable to function. EDS, vEDS, pots, mcas...severe malabsorption and chronic dehydration.

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