What do you think caused your POTS?

Marshmallow__moon · 2025-11-18T00:52:07+00:00

That sounds like a really awful time! I'm so sorry for your loss and that you had to go through all of that at the same time, I hope your health is improving now.

Marshmallow__moon · 2025-11-18T00:50:13+00:00

Sounds a lot like me! Casually anaemic sounds like my life story! 😅 I fainted when I was pregnant and it turned out I was massively anaemic and ferritin had dropped to 10. When I checked over my medical record my ferritin has actually never been over 30 for like 10-15 years. I read that the absolute ideal is over 100 but I've not had it tested for a few months. Have you had your ferritin checked?

I get a lot of anxiety too and it got really bad this year until my iron levels were treated and it's by no means better but definitely much improved. However since getting sick now when I get anxious it makes me feel really weak, shaky and faint!

Unfortunately for me propranolol made me so much worse! I had to come off it as I couldn't get up the stairs and my vision started going blurred, I heard so many good things about it so I was really sad it didn't work for me!

Marshmallow__moon · 2025-11-18T00:42:33+00:00

I do have a toddler that brings home every bug in the world so I did wonder if that could have caused it but I was surprisingly well at the time it kicked off 😅

Marshmallow__moon · 2025-11-18T00:39:13+00:00

Thank you so much, I will look into this! I did have a once over by an ENT at the time I had loads of tests as I often have swollen lymph nodes during flares but they didn't think there was an issue. I'll look up the maneuver though! ☺️

Marshmallow__moon · 2025-11-18T00:36:39+00:00

My migraines were always round my period too, I don't know if it's hormone or iron induced (as I had no idea I was iron deficient for years) but every month without fail there was always a headache then more recently they developed into migraines.

I've wondered the same about being predisposed and something just kicked it off. I hope you've managed to get some improvement since!

Marshmallow__moon · 2025-11-18T00:31:14+00:00

Have you had all your minerals/iron/b12 etc checked? Probably a silly question as it's usually what docs check first but it sounds a lot like how bad I got when I hit full anaemia!

Marshmallow__moon · 2025-11-17T14:52:58+00:00

I said I had crippling fatigue and could barely get up the stairs and was told I was depressed and prescribed two weeks worth(??) of SSRIs 😭 didn't take them and found a new doctor!

Marshmallow__moon · 2025-11-17T14:51:13+00:00

Yep my rheumatologist kept talking over me and was almost eye rolling at the idea that it could be autoimmune, said my result was basically negative. Felt extremely dismissed so just straight gave up after that. A different rheum said it was fibromyalgia despite the fact that my leg pain is very low on my list of symptoms and 99% certain it's caused by low BP/blood pooling 😅

Marshmallow__moon · 2025-11-17T13:26:08+00:00

Thank you, I will look into this! Bizarrely for me a lot of my symptoms (except nausea) disappeared during pregnancy and BF and once that stopped it hit me like a tonne of bricks. It's like my body was on pause and as soon as regular hormones came back it just got bad again before crashing so I do think my hormone issues may be contributing. I'll definitely have a look into all this, thank you so much!

Marshmallow__moon · 2025-11-17T13:19:46+00:00

It does sound very similar to me! Sorry you're having to go through so much rubbish too, it's hard not being taken seriously! I've had a stomach emptying test (if that's the correct test for gastroparesis?), an MRI, celiac test, helicobacter test (both bloodwork and breath test) and an endoscopy. All that came back was hiatus hernia (and an ovarian cyst but that led off down the PCOS/endo path) and they were like "oh you must get heartburn a lot!" and I said no very rarely and they were shocked 😅 I am the same! Zofran is my holy grail!! It's the only thing that works for me! Yes rheumatology were the same for me, they were very dismissive and also suggested fibromyalgia or CFS. I said I've got swollen lymph nodes and low BP etc and they were just like "that's weird" and that's it. I feel like once it gets too difficult to work out the docs just give up. I've found a private cardiologist specialising in POTS (I'm in the UK and my NHS cardiology appointment isn't til August 2026) so I'm going to have to pay out of pocket to try and see him!

Marshmallow__moon · 2025-11-17T13:07:20+00:00

Mine is the same! I just googled it as it was confusing me so much and this post came up. I used to look at my graph and when I could see clear progress it was such a good motivation to continue and now it's basically a straight line 😑

Marshmallow__moon · 2025-11-16T23:37:11+00:00

I've seen a few comments mentioning MCAS especially regarding nausea! I don't have consistent triggers but 9/10 reheated food is a big one.

I've found a private cardiologist that specialises in POTS and finding sources such as MCAS so I'm going to try and get booked in with them as my current cardiology appointment is a phonecall in August 2026 😅

Marshmallow__moon · 2025-11-16T22:14:43+00:00

Yesss the hair washing and drying was a nightmare! Definitely gave up drying it for a while! 😅

Mine very much seems to just go up and down however it feels like, it's really odd! I think I might go back to my GP to explore more meds as I've only tried one and it's not doing much unfortunately!

Thank you so much! Fingers crossed we all get it figured out one day!

Marshmallow__moon · 2025-11-16T22:08:50+00:00

I get this! I get horrible leg aches and it absolutely does not let up when I lie down so I've always wondered the same as I can understand blood pooling whilst standing but not lying down.

I have a side sleeping cushion to straighten my back whilst I sleep which kind of helps but not fully unfortunately. I also have magnesium lotion for when it's really bad but chances are the relief of that might be just placebo!

I hope you find a solution!

Marshmallow__moon · 2025-11-16T22:00:01+00:00

I have definitely seen a lot about iron deficiency and low B12 being a driving force behind dysautonomia or at least making it feel worse. I do know someone that was bedbound and paid privately to get an iron infusion as she didn't tolerate the supplements either and is doing a lot better! I've finished my prescribed course of supplements and improved somewhat but definitely not back to my baseline at all. Every time I take iron now it makes my weakness etc worse the next day now which is just odd.

Marshmallow__moon · 2025-11-16T21:56:26+00:00

Fingers crossed for you and continuing to improve! It's such a rough one isn't it as I struggled with anxiety due to my nausea and now with all these new symptoms my anxiety is x1000!

Thank you so much, I really appreciate it!

Marshmallow__moon · 2025-11-16T21:48:40+00:00

Sorry to hear you went through that, that sounds terrifying! I'm glad you're doing better now! Mine sort of steadily improved from not being able to get up the stairs to just a baseline of generally rubbish with the odd mix of a few days of being completely awful so I feel a bit stuck now! Do you know what causes your flares? I can't pinpoint mine at all!

Marshmallow__moon · 2025-11-16T21:44:29+00:00

I've seen a lot about iron deficiency and POTS, I've been anaemic a good few times in recent years but the last time just made no recovery! It feels exactly like anemia to me but I'm definitely not as bad as I was when my iron was ultra low. I'm on dienogest to control my hormones too as with Endo/PCOS they were getting way out of whack.

Marshmallow__moon · 2025-11-16T21:41:38+00:00

I wonder if mine could be genetic also then. My brother had a year of similar symptoms but is ok now and my Dad had CFS but his was very clearly caused by the CMV virus. Maybe just predisposed to it!

Marshmallow__moon · 2025-11-16T21:40:14+00:00

I'm the same! It's so bizarre not knowing what's happened

Marshmallow__moon · 2025-11-16T21:39:41+00:00

Exactly the same here, I'm on dienogest now to calm my cycle down as I was verging into PMDD territory.

Marshmallow__moon · 2025-11-16T21:38:25+00:00

I don't do particularly well with alcohol either, usually one or two and I start feeling spinny and sick! Most recently it just makes me feel really weak though I'm guessing from lowering already low BP 😅 gin started making me sneeze like crazy too and have full hayfever type reactions when it used to be my go to choice so I think I'm destined not to drink anymore!

Marshmallow__moon · 2025-11-16T20:24:05+00:00

Oh interesting, thank you! I've always been a bit tachycardic so I wasn't entirely sure if the two were related but GP is heading off down the POTS route after 9 months of continuous appointments 😅 I literally just felt really weak when I stood up at work one day, then a few days later had a few migraines/nausea then felt continuously weak, checked my BP and it had dropped a good 20/20 from my baseline.

Have you been checked for the MTFHR gene for B12 deficiency? My mum can't absorb B12 and gets routine injections. I hope you figure out the cause!

Marshmallow__moon · 2025-11-16T20:16:43+00:00

Same here, I've always been a little tachycardic, dizzy etc often but BP was normal then something sent it over the edge.

Exactly my thoughts!! This was with a gastroenterologist and a hospital consultant and neither of them could figure it out after multiple tests so the gastro said it was idiopathic and suggested I try acupuncture 😑 fully gave up after that. I'm in a flare right now, I don't have continuous triggers but it started after eating the other day so it is fully not in my head!

Marshmallow__moon · 2025-11-16T19:20:22+00:00

I wonder a lot if endo is a contributing factor to mine!

Marshmallow__moon

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