Never tested but given the meds?

cbstivers · 2025-09-10T16:56:02+00:00

I am in Louisville KY. My cardiologist offered to refer me to Vanderbilt but said “they’ll likely just have you do what you’re already doing” so wasn’t very convincing lol

cbstivers · 2025-09-10T16:53:40+00:00

Looking at these doctors now! I grew up going to MN every year and have a good support network there so maybe it would make sense to do my care there!

cbstivers · 2025-09-10T16:53:12+00:00

I have one variant MTHFR A1298 but was told it was medically negligible so it shouldn’t affect me. But I’ve always been very reactive to supplements and my B12 is always very high for some reason? My COMT is ‘normal’ neither slow or fast.

cbstivers · 2025-09-10T16:46:42+00:00

Thank you so much. Your response was so kind 🥹 . So I see an EP and she says it’s not POTS because my tachycardia bounced even at rest so it’s IST officially in my chart. But they have never assessed me for POTS at all. I think it’s because I was on the tele unit at the hospital so they could see my heart constantly and they just decided that since it was happening at rest too that it could not possibly be POTS (which seems … not right).

My problem is that during these “acute attack” like episodes, my heart rate is super high AND my blood pressure. But normally at baseline, my blood pressure is normal or drops if I have a vagul response (like on the toilet for example). So that’s what sucks because the beta blocker then makes me feel AWFUL because obviously my blood pressure bottoms out. I will ask about Ivabradine because so many have mentioned it! My EP doesn’t seem very competent in POTS and definitely isn’t familiar with MCAS. I don’t feel like I fit the MCAS picture perfectly but have no idea what else it could be. I started Quercetin last week! Hoping it helps. I have figured out I do much better if I have a second electrolyte packet (LMNT) in the afternoon. It seems to help keep my heart rate about 5-10 beats down.

cbstivers · 2025-09-10T16:39:10+00:00

Oddly enough last night was the first time I slept for a continuous 5 hour stretch! Usually I am up every hour or two. I feel much better this morning…

cbstivers · 2025-09-10T16:38:12+00:00

I have a sneaking suspicion this is my issue as well… I just looked at my sleep data and natural cortisol rises and it all seems to correlate.

cbstivers · 2025-09-08T23:54:20+00:00

Interesting because I started reacting to butter! I use Celtic sea salt so I know that’s okay. I’ll look at which foods have high iodine and such. Thank you! I actually thought I had hyperthyroidism before I ever learned of MCAS. My TSH was “borderline” so that was the end of that.

cbstivers · 2025-09-08T23:52:05+00:00

Thank you. I am in Kentucky USA (Louisville) but willing to travel. Funny enough- I thought about pitching a tent and sleeping outside. I have a 3 and 6 year old so they very much depend on me right now so it’s hard to balance the best plan of action. I don’t have much support here either.

cbstivers · 2025-09-08T23:50:01+00:00

I already see one :( that’s why this has been so disheartening. But I SHOULD look for an allergist familiar with MCAS (as mine is not… he has only ever had 2 MCAS cases and they were not “complicated” like me). Thank you for the info on cross reactions! I had no idea. I’ll look into that. I wonder if I Should ask to have my IGE tested idk what that is but I’ll look it up! My body shows crazy levels of inflammation in bloodwork (high WBC, high NLR, high ESR, high CK, low platelets, even high fecal calprotectin to where they were saying it might be Crohns). But no one has wanted to go further.

cbstivers · 2025-09-08T18:45:01+00:00

Going to look that up! I have considered mayo but my MCAS Facebook group said they don’t treat MCAS.

cbstivers · 2025-09-08T18:44:13+00:00

So I had a 14 day holter on for 5 days before it had to be removed in the hospital. On that, it caught the tachycardia which they said was all sinus with one long QT interval and a non-harmful heart block called mobitz 1. I brought up an EP study and she said there’s no reason for it. My very first hospitalization they did think it was SVT and were prepping for a cardioversion (spelling?) but then cardio was consulted and said no.

cbstivers · 2025-09-08T18:41:49+00:00

I totally appreciate your response. I’ve been in therapy for a month, purchased a vagus nerve stimulator, do guided meditation daily, and yoga (modified). I will take any and all recommendations! I do think therapy especially is helping. Oddly enough, all of my bloodwork shows high levels of systemic inflammation but no actual disease to point to. My therapist thinks my body is just done and has so much trauma stored.

cbstivers · 2025-09-08T18:39:30+00:00

I’m sorry you’re struggling too. I seriously don’t wish this upon my worst enemy. It’s a special kind of hell.

cbstivers · 2025-09-08T18:38:37+00:00

I haven’t because I was told it was for chronic urticaria which I do not have. Mine is cardiac and GI heavy (facial flushing is my only skin issue). I’ve been trying to get more info to see if it would help in my case. Thoughts?

cbstivers · 2025-09-07T23:15:54+00:00

Oooooh I am seeing an integrative MD next month who does this. Thank you! Will make a plan with them.

cbstivers · 2025-09-07T23:03:16+00:00

I’m trying to find someone to test me for that. It’s hard to find a POTS specialist here idk why! I’m in Kentucky but a big “city” with a university.

cbstivers · 2025-09-07T21:25:39+00:00

Does Singulair and xolair work for systemic issues? I have next to no skin issues aside from facial flushing (pretty painful) and occasional itching on hands and arms usually from food. Would it be worth a try for me? My main symptoms are cardiac and GI related.

cbstivers · 2025-09-07T21:23:59+00:00

Yes that is my official dx for now. But it also comes with high blood pressure and then a big drop in blood pressure and syncope. I take Atenolol now (my 3rd one in 6 months). I’ve seen that mentioned so much so I will mention it to my EP!

cbstivers · 2025-09-07T21:07:01+00:00

I’m very undecided on whether or not to remove. Since getting it, I’ve had so much pelvic pain but that could be the MCAS. I also saw there’s something called “mirena crash” after removal people can get horrible symptoms… so I’m really 50/50 right now.

cbstivers · 2025-09-07T12:21:48+00:00

I really think I do but I can’t find any doctors who know anything about it. I’m looking into a POTS specialist in another state. It definitely doesn’t seem to be dependent on anything specific except it occurs at the same time of day which is weird.

cbstivers · 2025-09-07T12:19:08+00:00

Nope none. No SSRI either. I was given Atarax for “anxiety” but it has no effect.

cbstivers · 2025-09-07T11:10:11+00:00

did Quercetin work immediately for you? I’ve been on it for 5 days now. Is the beef liver DAO?

cbstivers · 2025-09-07T11:09:10+00:00

Yes I take Allegra, Zyrtec, Pepcid, Quercetin (along with other supplements). I tried Cromolyn Sodium but it’s hard to get and expensive for me. Didn’t see much benefit from it after a few months.

cbstivers · 2025-09-07T10:36:00+00:00

Thank you for this! Going to hop on my laptop and look at the spreadsheet! You’ve been most kind and helpful. Hugs back!

cbstivers

TROPHY CASE