APS/Pots

[Apsandpots123]

could you guys share is anyone else has APS and POTS combined ? Was POTS diagnosed before or After APS?

Thank you

[Madmumma]

It took 20 years to get an APS diagnosis. I was diagnosed with CFS/ME and POTS first

[Apsandpots123 in reply to Madmumma]

Madmumma, thank you for your quick answer. When I get up in the morning my heart rate sky rockets by 30-40 bpm. Later in the day, the increase is much smaller (in the 10-20 BPM increase. Any of the typical advise offered helps ? Increase salt intake, more water etc ?

If I may ask what made the doctors diagnose APS?

The more I read, there seems to be a very tight relation between POTS, orthostatic intolerance and APS.

[Madmumma in reply to Apsandpots123]

Having bloods following a TIA 2 years ago showed I am triply positive for APS. I’ve been in and out of hospital since and each time they say POTS is a symptom of APS as our blood is like “sludge”. The inference is it’s not a thing on its own but one of the many sequelae of having blood that doesn’t flow smoothly due to being riddled with clots.

Increasing salt helps but it needs to be Himalayan or Sunshine Salt (Dr Sarah Myhill’s) - as they have minerals that ordinary table salt doesn’t. Upping water yes. I also tried tight tights and bodices but I found them uncomfortable and the more I thought about it I think they’re dangerous - compressing the sludge!

[Apsandpots123 in reply to Madmumma]

very interesting comments. I have ordered the compression socks, will get them later in the week hope to have them help out a bit. Noted your H salt comment, thank you for sharing.

[Charts]

HiI was diagnosed with pots 3 yrs ago now and found out about 9 months ago I have aps. The only reason I found out about aps was because I was complaining about sore throat all the time and they tested me for lupus. I didn't have lupus but positive for beta 2 glycoprotein

I'm on beta blockers which are good to stop heart racing. My blood pressure is low and nothing seems to sort that. I've been on salt tablets, fludrocortisone and midodrine. My hope was midodrine but I have a movement disorder and it was making it worse. Currently trying to figure out what this movement disorder is. I wear compression socks everyday and do find if I don't I feel worse.

How did you come to find out about your aps?

[Apsandpots123 in reply to Charts]

i was diagnosed with APS over a decade ago after having a DVT and PE. Looking back I think I might have started developing Dysautonomia years ago which kept progressing slowly until I finally noticed. Recently I have also been wondering if I have Gluten sensitivity as my heart rate sees a larger increase than usual after eating bread etc in addition in get joint pains and rash on my face when consuming products with gluten. Interestingly I have read that ppl with gluten sensitivity tend to have APS antibodies. Also, many ppl with POTS seem to have gluten sensitivity relative to control groups.

How high does you heart rate gets once you get out of bed ? Any improvement as the day goes by?

Thank you 🙏🏻

[Charts in reply to Apsandpots123]

Yeah looking back my pots symptoms were there but I could function so didn't pay much attention to things. My heart rate is pretty fast when I get out of bed it's pounding when upright, but the beta blockers kick in pretty quick and then it's calm for most of the day unless having a bad and then the beta blockers don't work as good. I had an appointment to get to today but not having a great day so had to cancel, my fatigue is really bad, had a shower and then back in bed broken. Fatigue is the hardest part for me, this is common in pots. Funny you said about the rash on your face, I get these red bumps which have showed up today! I don't know why I get them, they go for months and then reappear out of the blue. I'm ok with gluten so I know it's not that, just wish I knew when I get them. I also get a sore throat a lot! Are you on beta blockers?

[Apsandpots123 in reply to Charts]

I understand from you that you symptoms were progressing ? I am not on beta blockers for now. I was told to try the usual more water, more salt and socks as well as getting in a fitness program. I am also avoiding gluten in any possible way.

[Charts in reply to Apsandpots123]

Yeah symptoms definitely got worse. But I had a lot of operations close together and 2 major ones on both ears (as I had cholesteatoma) and 3rd for endometriosis which all this could have been a contributing factor. I wasn't having seizures/involuntary movements until my 3rd operation and I say that was the last straw that broke the camels back! I was having pots symptoms before but got worse after this. I would find it very hard without the beta blockers and you will find relief if they do try you. But they have to start from the bottom first the doctors

[Apsandpots123 in reply to Charts]

I’ll raise the beta blockers issue with my doctor during my next visit. Truly appreciate your quick answers and the amount info you were kind enough to share 🙏🏻

[Charts in reply to Apsandpots123]

Any question you need to ask feel free to ask!Take care

[Apsandpots123 in reply to Charts]

Charts hi,

Was wondering what subtype of POTS were you diagnosed with ? Thank you

[Charts in reply to Apsandpots123]

HiI was never diagnosed with a subtype of pots. When I asked the doctor at the time he smiled and said no pots is pots no such thing as subtypes. But that's not what I have heard.

[Jolevans]

Hi, I don’t have POTS but my heart rate does shoot up when I first get out of bed. My heart rate varies from 70 to 140 throughout the day everyday. I was wondering if any one else has this issue?

[Apsandpots123 in reply to Jolevans]

do you keep track during the day ? Is it also elevated while standing during the day ?

[Apsandpots123 in reply to Jolevans]

Btw, did you get checked for POTS?

[Jolevans]

I have never heard of POTS but my heart rate goes up and down all day whether I’m standing or not. I was put in disoprolol until they realised I had asthma..

[KellyInTexas Administrator]

yes, yes, . APS, POTS, and dysautonomia .

I was diagnosed with dysautonomia first. ( Gastroparesis, which were thought to be a form of gut and brain not communication.)

Then APS was discovered after a DVT and optic nerve ischemia. ( IONA).

Tilt table testing done by cardiologist revealed POTS.

Seizures were due to micro clots- temporal lobe

Gastroparesis cleared up with anti or- was actually “hypoprofusion” to bowels / mesoenteric hypoprofusion

[Apsandpots123 in reply to KellyInTexas]

thanks so much for sharing the info.

[Apsandpots123 in reply to KellyInTexas]

Kelly, how long after the POTS Diagnosis did you get the diagnosis of APS. I get dry red eyes and blurring vision, racing heart when standing, obviously sweating when standing for long.

Do any of these sound familiar ?

[KellyInTexas Administrator in reply to Apsandpots123]

First came the diagnosis of “dysautonomia” from my colorectal surgeon ( gastro paresis) , who sent me to his preferred gastroenterologist. He made formal diagnosis of “ dysautonomia”, put me on methscopolomine forte , and sent me to neurologist. ( spoiler alert: the trouble was hypoprofusion from small clotting to bowels causing bowels to shut down.)

From there I was given EEG, confirmed Left lobe temporal lobe epilepsy- started on a process of anti epileptic medications-

Had trouble controlling seizures. ( spoiler alert- micro clotting amygdala / hippo campus )

Then about a year later larger problems, full DVT’s , APS diagnosed, and Tilt table test preformed about a month later - by a neuro/ cardio specialist.

So APS confirmed first.

[Apsandpots123 in reply to KellyInTexas]

Dear Kelly,

Firstly, thank you for the quick and detailed replay.

I keep reading in different sources that APS and POTS are being recognized as very much connected, either the clotting or the antibodies are causing damage to the nerve system. Any other tests conducted besides the tilt table to confirm the diagnosis ?

Thank you

[KellyInTexas Administrator in reply to Apsandpots123]

No- observations/ blood pooling, etc.

[Apsandpots123 in reply to KellyInTexas]

In other words, a simple physical exam plus the tilt test confirmed POTS (blood pooling is something I also get/lower legs/feet/palms. Thanks again for sharing. Wishing you all the very best for the holiday season. 😃

[Apsandpots123 in reply to KellyInTexas]

Kelly, I have seen a post you mentioning a borderline POTS. I was wondering if you could elaborate on what did they mean borderline POTS? I also have blood pooling in the legs and borderline POTS. As my heart rate increased at time just below the 30 required (that was the reason they referred to my condition as “borderline”). Would be happy to hear your experience with reference to the “borderline” issue.

Thank you

[KellyInTexas Administrator in reply to Apsandpots123]

I was diagnosed with “dysautonomia” after surgeries and surgeries 2010s 2012…

I was diagnosed APS in late 2016

I was diagnosed with POtS via tilt table test 2017. My numbers back then were positive, met criteria, but what I myself called “mild” because my symptoms were also mild. ( certainly compared to what they had been bef before my APS diagnosis November 2016 and POTS diagnosis early March.

[Apsandpots123 in reply to KellyInTexas]

Kelly, thank you for the answer. If I may ask the last one question please. The diagnosis was of neuropathic PoTs ? Or a combo of neuropatic and Hyperadrenergic POTS? Thank you very much and have a wonderful new year 🙏🏻

[KellyInTexas Administrator in reply to Apsandpots123]

The diagnosis was POTS.

[sydb]

I was misdiagnosed with POTS, but I actually have OH because my BP drops precipitously when upright, especially first thing in the morning, and my HR rises, as it should, to compensate. I had that diagnosis way before APS.

[Apsandpots123 in reply to sydb]

is the OH related in anyway to the APS diagnosis ? As OH can be related to Dysautonomia from what I read?

[sydb in reply to Apsandpots123]

OH can be caused by a few things, but for many like me, it is a type of dysautonomia. Dysautonomia is the umbrella term and diseases like POTS or OH are categories within it. I don't know for sure, but I believe they are part of a sequela of illnesses. There's a doc - Andrew Maxwell who talks about The Pentad Super Syndrome. Don't love the name, but I fit in this category perfectly, as I also have a lot of other things - csf leak, IJVS, etc. He talks about how one begets the other and even mentioned APS.

To be clear, I do NOT in any way think this is the issue or "answer" for everyone with APS/aPL+, but I do think it is for me.

[Apsandpots123 in reply to sydb]

Thank you for sharing. I’ll read about Pentad super syndrome. Be well and be safe 🙏🏻

[sydb in reply to Apsandpots123]

My pleasure, and you, too!🌻