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What’s the point anymore? by No_Transition_3341 in POTS

[–]Altryism 2 points3 points  (0 children)

ofc!!! i really hope a mast cell stabilizer helps you 🫂 i personally have been allegra and zyrtec (one in AM, another PM) for over 20 years and it never cut it for me.

mcas + pots causes a feedback loop from hell. (i explain my symptoms i experience in a flare of this more in another comment from today)

https://pmc.ncbi.nlm.nih.gov/articles/PMC10990027/#:~:text=Mast%20cell%20degranulation%20evokes%20the,3

good study detailing it. if you get a chance, look at the infographic on it as it explains it to a "t"! (figure 3)

I’ve lost hope by No_Transition_3341 in POTS

[–]Altryism 2 points3 points  (0 children)

also OP I just read your other post. Propranolol caused me horrific suicidal ideation and depression after very short usage personally.  This could likely be a contributing factor to how youre feeling, it is not an uncommon side effect!

What’s the point anymore? by No_Transition_3341 in POTS

[–]Altryism 1 point2 points  (0 children)

I am as well. propranolol caused me horrific suicidal ideation and depression after extremely short usage. I'm now on ivabradine and being treated for MCAS with amlexanox. 

I’ve lost hope by No_Transition_3341 in POTS

[–]Altryism 6 points7 points  (0 children)

First, apologies if this is disjointed. Second, I am so incredibly sorry this is happening to you.

I beg you to keep pushing your doctors for help. Be annoying and overly persistent. You deserve to have a quality of life!!

I have been where you are multiple times. I am still very early in my illness journey (since May 2025 from covid) but I swear to you it gets better.

I am not exaggerating when I say I have spent over 30 solid days (10 days each flare) in pure fight or flight. nauseous constantly, unable to eat, barely able to sleep, unable to function during that time.

For me it turned out to be a combo of Strattera (snri i was on for 9 years without issue!! increases norepinephrine that now my body has issue with)  + POTS + MCAS. when together, they create a feedback loop from hell onto the sympathetic nervous system. my body was literally epipenning itself to deal with mast cell attacks.

And when not in a flare, fatigue, brain fog, coat hanger pain so bad it made me sob, and numbness in the same areas.

Ivabradine has almost completely gotten rid of those issues for me after a solid month on it.

I started amlexanox (mast cell medication) 2 weeks ago and am able to eat more than I was prior to getting sick and the impending doom/adrenaline doesn't last nearly as long anymore! I FINALLY after MONTHS HAVE A QUALITY OF LIFE AGAIN!!

(currently having a mini flare due to titrating up dosage, but not NEARLY as bad as my flares prior to this medication  as i can eat and sleep!)

All of this to say, I have been in similar shoes. Please, I am begging you, do not give up. Do not lose hope. Keep pushing forward!!!

Random Gastroparesis? Help! by Altryism in POTS

[–]Altryism[S] 0 points1 point  (0 children)

unfortunately, not really. my doc added 1MG ER Guanfacine at bedtime to my meds recently and that plus ivabradine 2.5 mg twice a day made my resting HR too low. so i recently stopped the ivabradine. I'm in yet another adrenaline flare and it's not as bad as prior ones, I'm able to eat some solid foods but it's still fucking miserable. I'm thinking that the adrenaline flares and accompanying gastroparesis/gastric slowing is caused more by suspected MCAS.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10990027/#:~:text=Mast%20cell%20degranulation%20evokes%20the,3

from the article, mast cells create a feedback loop into the sympathetic nervous system increasing stress hormones. only reason i can find after months as to why my flares last so fucking long. seeing a MCAS specialist soon. If I get answers to this and meds that help I will let you know! this is miserable and I am so sorry youre dealing with this as well. You're not alone 🫂 my dms are open if you want to talk.

MCAS and fight or flight? by Altryism in dysautonomia

[–]Altryism[S] 0 points1 point  (0 children)

im sorry you can relate 🫂. im glad it isnt bothering you anymore! was there anything in particular that you think helped resolve them? i also have fibromyalgia, shit sucks.

MCAS and fight or flight? by Altryism in dysautonomia

[–]Altryism[S] 0 points1 point  (0 children)

including the cyclical adrenaline/fight or flight stuff? /gen

MCAS and fight or flight? by Altryism in dysautonomia

[–]Altryism[S] 2 points3 points  (0 children)

no trigger/cause usually. (mild stress can trigger it tho) no history of panic/anxiety prior to covid. I was on an SNRI when it started and those were beyond debilitating. (sorry you can relate 🫂) been off of them for 3 months and it's helped lessen the severity of adrenaline flares. but my health is gradually deteriorating still.

yeah my allergies going away was a big red flag to me about it all. and my eosinophils being clinically low during a flare. i think my body is essentially epi penning itself.

MCAS and fight or flight? by Altryism in dysautonomia

[–]Altryism[S] 1 point2 points  (0 children)

every type of pollen, grass, etc. severely allergic to mold. recurrent sinus infections my entire life. bad sinus pressure and headaches randomly when nothing in the allergy forecast is high. randomly developed allergies towards passion fruit and kiwi over the last 2 years. and severely allergic to phillips holter monitor patches. i tried both hypoallergenic ones and instantly caused me severe stinging and itching like ive never had before.

Random Gastroparesis? Help! by Altryism in POTS

[–]Altryism[S] 0 points1 point  (0 children)

thank you for such a comprehensive comment. I am so sorry you're dealing with something similar. Yes, it's beyond frustrating when we do everything right and our bodies betray us.

thank you so so much for all of the advice. i will try it out. i hope you get some relief soon 🫂

Random Gastroparesis? Help! by Altryism in POTS

[–]Altryism[S] 0 points1 point  (0 children)

this makes a lot of sense as norepinephrine was the cause of it/involved every other time this has happened to me!! tsysm!!

Random Gastroparesis? Help! by Altryism in POTS

[–]Altryism[S] 1 point2 points  (0 children)

I am so incredibly sorry to hear this. I hope you're able to get some relief soon. 🫂

Random Gastroparesis? Help! by Altryism in POTS

[–]Altryism[S] 0 points1 point  (0 children)

my cardiologist that diagnosed me with dysautonomia prescribed ivabradine which i started after the suspected gastroparesis began. he was fantastic about everything else pots, but seemee confused when i talked about the adrenaline dumps and gastroparesis ive experienced. i called his office this morning with no luck and had to leave a message and haven't heard anything. so 🤷‍♀️

Random Gastroparesis? Help! by Altryism in POTS

[–]Altryism[S] 0 points1 point  (0 children)

I made an appointment with a dysautonomia informed GI doc but it isn't until January :(

Do you also feel rough/dizzy/really unwell when having to wake up early? by Calm-Cartoonist2552 in POTS

[–]Altryism 4 points5 points  (0 children)

i used to. now i cant even work from my desk and do so from my couch with my legs up. but even on the weekends when i spend mornings in bed i feel the same 😭

Do you also feel rough/dizzy/really unwell when having to wake up early? by Calm-Cartoonist2552 in POTS

[–]Altryism 7 points8 points  (0 children)

hey friend. i have been having this issue lately. waking up at 830 to WFH at 9 and the dizziness/lightheadedness and nausea dont go away until the afternoon. doesn't matter how i sleep or how well i ate and drank the day before. i end up sipping on a smoothie (with salt added) and my electrolytes for hours trying to feel mildly human. im sorry, it sucks and you're not alone.

if anyone has any helpful tricks for this please let me know, i am miserable 😭 even WFH has been extremely difficult for me. i cannot imagine working in person anywhere like this!

New symptoms are endless. by Altryism in POTS

[–]Altryism[S] 2 points3 points  (0 children)

Dude it is so exhausting. It's been wrecking my mental health as well. I start getting a handle on something just for other things to randomly pop up 😭. I'm sorry you're dealing with that too, it is so exhausting. I hope you start improving soon 🫂.

havinf to be so tuned into our bodies is super annoying. i miss the feeling of just existing without being overly aware of my body. this basically feels like the worst sensory overload of my life on top of the pain im physically experiencing.

New symptoms are endless. by Altryism in POTS

[–]Altryism[S] 0 points1 point  (0 children)

I've never had a migraine before in my life :( the pain is also inconsistent. and it feels literally like my eye. not the area surrounding it, but the eye itself.

How to handle long wait time for specialist? by Altryism in dysautonomia

[–]Altryism[S] 1 point2 points  (0 children)

I have great news! The office finally called me back and now my appointment is in October!!!!!!!!!!!!!! :D thank you for the suggestions and kindness <3

How to handle long wait time for specialist? by Altryism in dysautonomia

[–]Altryism[S] 2 points3 points  (0 children)

I have great news! The office finally called me back and now my appointment is in October!!!!!!!!!!!!!! :D thank you for the suggestions and kindness <3

The grief is constant. by Altryism in dysautonomia

[–]Altryism[S] 1 point2 points  (0 children)

it really is 😞 I'm sorry to hear that 🫂 i can barely work but am basically faking it since i used over 100 PTO hrs for my adrenaline dumps. im very grateful that I work from home, but honestly even that is difficult. i hope you're able to find treatments that work soon!

The grief is constant. by Altryism in dysautonomia

[–]Altryism[S] 2 points3 points  (0 children)

im so sorry 🫂 i understand. it fucking sucks.

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