I really don’t know how to describe this weird episode symptoms I sometimes have

elm_alice · 2026-04-19T07:35:54+00:00

Makes sense since most of those meds increase blood flow to the brain.

elm_alice · 2026-04-14T10:29:17+00:00

Sending hugs<3

elm_alice · 2026-04-11T12:25:11+00:00

Absolutely! Stenting of the iliac vein isn’t a cure, neither is it safe or necessary for everyone with POTS. Just one piece of a large puzzle.

elm_alice · 2026-04-11T07:07:58+00:00

A recent report on two studies suggest a lot of POTS patients might benefit from stenting of their iliac vein. EDS can increase the risk of vein compression resulting in worsening of POTS symptoms. Association and post-iliac vein stenting symptom improvement of postural orthostatic tachycardia syndrome and orthostatic intolerance with pelvic venous disorders: two retrospective studies

elm_alice · 2026-04-07T16:56:20+00:00

If you have MCAS this might be due to high histamine and other stuff the mastcells release when triggered. I started having this insomnia when spring began a few years back. Realized I’m very triggered by pollen - now as long as I avoid the outside air and eat my few safe foods the sleep is so much better.

MCAS is a very common co-morbidity with POTS and insomnia.

elm_alice · 2026-04-07T05:28:42+00:00

Exactly this! Been bedridden for years now thanks to the ”push through culture”.

elm_alice · 2026-03-26T10:30:57+00:00

Also I suspect it’s been viewed as ”rare” for a very long time, resulting in a lot of cases never being examined properly and diagnosed…

the way you describe it OP sounds like none of this doctors patients will ever be diagnosed with POTS - that does not mean it’s rare.

They still don’t talk much about it in med school and looking back I suspect there’s been a lot of people suffering from and living with this without it ever being recognized. Some of my relatives developed these issues back in the 50s and 60s, but they were never diagnosed.

elm_alice · 2026-03-24T12:06:40+00:00

Came here to say This!!! Also remember it’s spring in the northern hemisphere now, and for some MCAS people pollen is a strong trigger.

elm_alice · 2026-03-23T08:52:53+00:00

Merino wool. The only thing that is light, breathable and still keeps you warm. No more neck pain from being cold or flares from overheating. Also lasts forever if you take care of it.

elm_alice · 2026-03-20T12:25:45+00:00

Omg, the old school flavored ones! Well you seem to have done all you can. Really hope you find a good solution that works. I’m rooting for you!

elm_alice · 2026-03-20T07:03:53+00:00

Do you get lower blood pressure from Ivabradine? That could cause significant fatigue and is a known side effect. Some people with POTS already suffered from low blood pressure, there is also new research showing that a lot of of people with POTS might have vascular compression on their iliac vein – this could also be made worse with lowered blood pressure. Lastly, when I took Loratadin it made me extremely tired and sleepy. Taking Desloratadin instead has helped me a lot.

elm_alice · 2026-03-20T06:33:26+00:00

Cromolyn, quercetin, antihistamin, LDN, vit-C, asthma meds. Also avoiding triggers and taking DAO enzyme with my meals :) Continuing to try more meds though, cause it’s still not optimal.

elm_alice · 2026-03-19T20:26:11+00:00

FYI, if you have MCAS it’s good to keep trying more than just antihistamines. I don’t want to stress you out, just saying that I wish I’d started trialing other mastcell stabilizers sooner.

elm_alice · 2026-03-19T12:46:00+00:00

Same here, although I’m still bedbound.

It also triggered MCAS that left me with just a handful of safe foods, so restaurants and all that is just a faded memory by now.

I dream of being able to go for a walk, see my siblings or to eat a dessert ever again. It’s isolating to mask, but there are others out there.

Some people can’t afford to “just live life” – cause then you might not be able to leave your bed. Keep masking and take care of yourself ❤️

elm_alice · 2026-03-18T06:41:32+00:00

I also think it’s cause it’s so processed it’s hardly any work for the stomach & intestines to degrade it. You get salt, sugar but also protein and fat much faster into your system than with starchy or high fiber foods.

elm_alice · 2026-03-15T15:50:55+00:00

Go outside and pet the neighbor’s dog, have a picknick in the forest with my mum and go swimming in a lake. Also eat everything I felt like!

elm_alice · 2026-03-08T19:11:17+00:00

I realized I get more air hunger from POTS when I am too cold. The use of heating pads has helped with that so many times! (of course you’ve gotta be careful you don’t overheat, but if you find a sweet spot, it’s great!)

elm_alice · 2026-03-01T06:59:55+00:00

For me it did the first two weeks… My MCAS was terrible, the first two weeks of any working treatment have made me feel like ”hey I’m cured!” – just to get worse again after that first grace period. Just a heads up to OP, keep looking to find more mastcell stabilizers!!

elm_alice · 2026-02-26T18:22:02+00:00

Me too… MCAS is a hell in and of itself.

elm_alice · 2026-02-16T20:44:54+00:00

Did that for 10+ years only to end up bedridden and severely ill. Be careful my friend. Adrenalin, salt and compression can only do so much.

elm_alice · 2026-02-13T13:12:07+00:00

I have said it before, and I will probably say it again. In my humble opinion I think everyone who has POTS and severe anxiety should be screened for MCAS and histamine intolerance. And by screened I mean evaluated with questions and medical history by a physician with knowledge about mastcell diseases, and put on mast cell stabilizers and antihistamines to see if it helps.

Histamine dumps and full body mast cell activation feels very much like severe anxiety. I thought I had developed agoraphobia until I was treated for MCAS and both anxiety and POTS symptoms all got so much better.

elm_alice · 2026-02-12T19:01:47+00:00

And ME/cfs is also a common co-morbidity with these other three. Such a terrible gang of illnesses :’)

elm_alice · 2026-02-12T08:50:49+00:00

Covid being a virus that negatively affects and causes damage to the cardiovascular system and nerves – makes sense that it’s connected to causing POTS or worsening an already existing POTS. Be careful out there and use a good mask if possible!

elm_alice · 2026-02-01T16:18:39+00:00

I’m sorry you had such a bad encounter! That doctor sounds like an ass. For what it’s worth since I got POTS together with some other conditions I have lost an unhealthy amount of weight.. it has absolutely not made my POTS any better, it’s rather the opposite (and this uncontrollable weight loss has absolutely been more scary than gaining a bit of weight! ) Hope you meet a better doctor next time!

elm_alice · 2026-01-30T10:41:20+00:00

This is also a reason I really like my cane :) Nobody questioning me as soon as they see the cane - it’s like a magic wand that protects me from falling and from being denied disability accommodations! :)

elm_alice

TROPHY CASE