andybonse

Welcome!

I'm glad you have a diagnosis, but this is not enough to really answer your questions, in fact its not a diagnosis its a syndrome of symptoms.

For example, my POTS(dysautonomia) is caused by Ehlers Danlos Syndrome, there are lots of causes, autoimmune illnesses and neuropathies etc.

I'm in the UK too, a specialist in the area is Professor Mathias in London, i'd suggest getting some basic bloods such as anti nuclear antibodies test, you've probably had all the basic ones. Are you bendy at all? Look up bleighton scale hypermobility.

Andy.

well an abnormal thermo doesnt mean AAG at all, it could just be small fibre neuropathy etc.

Exactly same with me normal bp apart from higher pp. In bed now its 48.

I took 1375mg vitamin c before this episode and yesterday same, vitamin c promotoes nitric oxide vasodilation, very interesting!

Well when I tried midodrine my heart didnt beat as hard and my diastolic was higher. So my pp was lower but midodrine made me feel horribly anxious and weird in my head.

So maybe because florinef increases bp it might even it out.

Last few days ive had a episode lasting a hourish of bp 128/59 so a pp of 69.

Usually bp is 110-120/60-70.

My pp is always above 40.

Does this indicate vasoconstriction? I am starting florinef this week and wonder of it will balance the bp out and make the dialostic more normal.

Also when I went up the stairs hr went from 70 to 115 and bp was 113/77. So a pp of 36. How does this work physiology wise?

I get this every single day exactly how you mention. I believe increased vasoconstriction of upper body may cause reduced blood flow to compensate for the other areas that dont work.

I'm the same, I think it all boils down to change, it just varies over time I guess.

I dont think a bp that small of jump should be causing bradycardia. But heres my take on it.

The body may possibly have recovered some nerves so it works a bit better at vasoconstriction, so if there is vasoconstriction that still over compensates for what doesnt vasoconstrict, it would cause a reflex slower heart rate.

Your exactly the same as me mate, my HR other week was lower even standing and my head felt so weird and horrible i could not bare it.

The thing is, BP probably has no effect on the heart rate, since my bp can be 100/49 and be hr 50 and then 120/70 and be hr 50. Its so confusing!

The florinef, should cause a low HR to actually increase a bit, due to a Bainbridge reflex, which is what im hoping lol, I also think because of florinef, vessels can vasodilate more rather than an over compensation leading to better blood flow in the brain and more oxygen less symptoms.

Thats my theory anyways,

Mountain girl, you might want to discuss upping the dose to 0.2mg with your doctor. This may help you more as people say they have had significant improvements from the 0.2mg dose.

Ah yeah,

I'm going try try, alpha lipoic acid, coq10, fish oil, l cartinine, b12, b1. All for nerve repair .

Yeah Dave, I was thinking possibly the exercise!

My BP is always fine too.

I'm getting Florinef to try soon, might be a good thing.

Are you taking any supplements for your neuropathy?

Not yet, I get it this week!

What was your cause of this bigskyfam?

no problem .

Thanks guys,

thats cool I dont mind a higher resting hr as long as it doesnt go crazy haha, 60-70 makes me feel happier .

Hi,

My resting HR can range from 47-64 laid down, usually in 50's laid down and 58-70 sat up then standing up to 110.

My question is, do you think florinef will lower my resting HR even more? I wouldnt want that!

Always a complication when we want to be treated!!

Thanks Rosey!

Bustersacc11, did your heart rate not go up much with exercise then?

It is basically damaged nerves, specifically your autonomic nerves. Most people with POTS have Neuropathy, even in EDS. So the brains signals dont get to the organ(blood vessels) to constrict when we stand so we get POTS.

Thanks, I just wonder if requesting a pacemaker would be worth it. Probably not worth getting it done as it doesn't go under 50 often.

Hi,

Last night laid down in bed checked my heart rate and it was 47 BP 114/59, BP is usually this laid down regardless of hr.

I sat up and it went to 61, then laid back down went to 52-55.

I asked a cardiologist and he said its normal?

Worries me a bit lol, I was a little tight chested, short of breath but I get like that all time regardless of hr.

Its deffo not a problem with my heart, its been extensively tested.

Any suggestions?

Yeah exactly the same as me,

I mean I can even have a heart rate increase of 10-15 and ill still feel crap. It's defiantly some sort of low blood pressure issue or lack of blood. So surely florinef should help. Will find out a guess lol.

Thank you, thats a very positive write up!

My bp is normal, but my symptoms are that of low bp, so I assume my bp readings are not accurate of whats going on really. my dystolic bp is usually 50-70, so lower than id actually like. So if I could get that to 80 I'd be pretty chuffed and think it would really help me.

Thanks! I could do we some improvements. I just need aboost and think ill be ok.

Good luck, a lot of people feel better when pregnant after say 3 months due to the increased blood volume! Just keep getting pregz haha!!

Does it impove any of these symptoms:

Light headedness

Dizziness

Shortness of breath

Fatigue/lethargic

Standing heart rate

Also how much does it increase your blood pressure by at rest, compared to without it?

Thank you.

Hi All,

Please can you take the time to fill out this poll,

I am doing some research projects to get an idea of causes and probabilities.

Thanks

Andy

Your bp is like mine laying and sitting standing etc. mine can go up sometimes though, but thats my baseline. Can you keep me updated if you try florinef symptom and bp wise?? please!