sb4

I too get this sound and feeling. Feels like liquid is getting squirted through my brainstem. Maybe its lymph fluid or something?

@Weary I had the same test minus aA1 and came back negative on all of them. I was just outside the at risk range on M3 and M4, which come up in some POTS papers and A1 is of course the main one so make of that what you will.

Virus gets into b cells, causes autoimmunity against alpha/beta adrenergic and muscarinic receptors. There currently is only one place to get this test, which im trying to do.

21 hours ago, RecipeForDisaster said:

I'm outside a lot and I have a sunlight lamp for vitamin D (I supplement it too). I'm cold a lot, and keep the house at 60f. I will check out Jack Kruse.

I feel better without the diltiazem, for better or worse. I still woke up hot and tachycardic at 3am, but metoprolol gave me a few hours of sleep before that, at least. I skipped magnesium just to see if it changed how metoprolol worked, but no.  

You seem to be doing alot good but I would still recommend checking out kruse

14 hours ago, RecipeForDisaster said:

I'm going to ask about ivrabidine. Please tell me more about light! I do take 500mg magnesium nightly. What is the cold about?

Basically we need a lot of sun light , unfortunately at high latitudes it's hard to get. I benefit from vielight 810, reptile lights and natural light. I highly recommend reading jack kruses work.

Cold thermogenesis provided benefits and negatives.

I had this to the point I was in hospital for a month, it was UNBEARABLE. Improved with propanolol and mirtazapine. You may also want to look at ivabradine, magnesium, light (specifically red) and cold.

Cool, so what did they use to diagnose you and what are they using to treat you.

I think it's very promising and absolutely believe in being able to diagnose from the bodies fields. What have they done so far and what symptoms have improved?

2 hours ago, TCP said:

Nothing surprises me with specialists. Several neurologists I have seen have been useless with the conditions that I have presented over the years. They will not follow-up with any tests even when I say I will pay privately for them. 

Gastroenterologists, neurologists, cardiologists, gynaecologists, rheumatologists and respiratory doctors etc have all misdiagnosed me with many conditions and many were very obvious. Some have denied that I have certain things and then admitted later that I have them. I found out after accessing my medical notes that I had endometriosis, only no one bothered to tell me! They can get it very wrong and that is why we have to push for tests etc or we are left suffering. 

Yes unfortunately our experiences seem common to most with these problems.

16 hours ago, TCP said:

I have been labelled anxious in my notes for years as I had a fast pulse rate and I didn't know. With autonomic dysfunction you will get anxiety as part of the pattern. If you think about it, if your nervous system is damaged, malfunctioning or inflamed then you will show the signs of being hyper anxious. To say that your condition is anxiety when you obviously have the signs of POTS, then aren't a very good POTS doctor and do not follow the correct criteria for diagnosis. 

Yes I understand this somewhat from normal doctors but not pots! Thing is I don't even act anxious. Frustrating.

1 hour ago, TCP said:

Yes, good idea. I did actually get to see the cardio who oversees TTT results and we chatted and he wasn't aware that I had autonomic dysfunction and I think if he had been made aware it may have changed his interpretation of the results. I went onto see a much more clued-up, younger doctor who is more skilled in this field. I think many tests, for various conditions, are often played down as doctors aren't confident or savvy about understanding or giving definitive diagnoses. Looking at test results in isolation fails to take in the patient's medical history which is often vital if there is to be an accurate diagnosis. I think doctors forget that patients suffering will continue without appropriate treatment. 

I understand what you're saying however the doctor who has diagnosed me, without seeing me, with anxiety IS a pots specialist, and the only one in my area.

Thanks TCP, I may do that or I may request to see the specialist in person, instead of his nurse.

Thanks Corina, I'm fairly sure they would dismiss the list or worst view it as a sign of hypercondria. Besides my heart rate is more stable with the drugs. However my symptoms are all still here.

Hey,

I took a tilt table test a while back. The result was:

Laying down: 110 bpm

Upright: 145bpm

I was on Mirtazapine and Propanolol with the test.

Dx for pots is a raise in bpm by 30 from lying to standing (check) OR over 120bpm on standing (check).

I have recently received a letter from the nurse of the POTS specialist saying that the specialist (whom I have never met) has diagnosed me with anxiety and hyperventilation!?

I can say for sure that I would bet my life on not having anxiety. I know what anxiety feels like and I know I am no more anxious now than I was when I got ill, after a virus. I have fully commited to things like meditation, deep breathing, electric stimulation, ASMR, etc and have noticed almost no improvement in my symptoms. Furthermore, last time I was in hospital I was cleared by the psycologist from having any problems.

I can only think that he has looked at my past notes and found that other doctors have diagnosed me with this in the past when I was unaware of what POTS was. I find it mind boggling that he has Dx me with anxiety without having ever met me...

Last time I met and talked with his nurse. I am going again soon to see, I presume, this nurse again. What can I do to turn this around? I am struggling big time physically and without treatment for this I am in BIG trouble.

Thanks, Sean.

Thank you. I am reasured. I have already adapted deep breathing and meditation into my bag of tricks, it is useful. It's just difficult to fully trust it won't happen, it's our life and we only need to be wrong once...

@Katybug thank you. It's reassuring however I am still worried it's possible as I have been really pushing through it for 5yrs now, working when heart was constantly pounding hard 130bpm+ all day. I knew something serious was up but didn't know what and needed money. Suprised I wasn't fired.

Also I have been progressively getting worse with this and nothing is stopping my decline. If I get any worse I cannot see my body being able to cope.

Thanks for the replies.

I have heard that sympathetic overactivation and parasympathetic underactivation is the cause of heart attacks and I feel this is the cause of my pots. So shouldn't it follow that I am more likely to have one.

Also it's not bog standed pots, I've had that for 5yr. It's hard to explain as when I write it down it doesn't sound anywhere near as bad as it is. However it's exactly how I'd imagine a heart attack feels like.

I had various heart tests in hospital 6 month ago and thankfully they came back fine.

I am sure I have read somewhere of people with pots having heart attacks they attribute to POTS. I think it may only apply to those who have sympathetic overactivation.

Since my POTS has gotten more extreme, I think I have been on the verge of a heart attack several times. I get really weak, heart pounding painfully, numb tingly arms and legs, left arm and chest very achy, light headed, trouble breathing, feeling of impending doom, and anything stressful (loud sound, etc) causes me great suffering (heart feels painfully drained and condition worsens).

I am 26 so should not be getting these symptoms. I've read of other people with pots having heart attacks and am wandering how often it happens?

I too have been getting this recently and at the times it's high I feel bad. Like shallow breathing and heart feeling on edge, hard to describe.

Definitely, Less sun, less IR, less UV, lower temp. These are all massive variables when it comes to health.

My heart rate and pounding increases with stretching and I have to cut short my stretching as the lactic acid build up is instant. Not sure if hr falls after.

I'm pretty sure it's causing night time adrenaline surges for me, which disrupt sleep.

Be careful when tapering off mirtazapine. It can bring back pots symptoms 

Yeah, I'm hoping by irradiating the blood with ir, it will be able to have similar effects when it travels to the brain.

The vielight is slanted toward the skull by about 45degrees? It goes in about 3-4cm.