POTS type

[Pre]

I've been measuring my pulse difference between laying and standing, and the difference is 30 bpm at 2,5, and 10 minutes after standing (my blood pressure more or less stays the same). So I definitely have POTS. I'm trying to establish which type though: 

My blood doesn't pool in my limbs when standing during the day. In fact my veins are invisible and nurses always have trouble finding my veins to draw blood. But then after 9 pm the veins in my limbs slowly start filling up and I feel pressure in the ones in my legs, but here's the kicker - that's when most of my symptoms resolve and I feel much better and relaxed, and my tachycardia is reduced.

I have no body fatigue. My limbs don't feel heavy. But I have shortness of breath and, strangely, nasal stuffiness after standing or walking too long. I'm dizzy and have brain fog and inability to focus most of the day, much of which is relieved by night time (and of course laying down). I feel shaky and have tremors all over my body. If I stand too long my knees start shaking. I'm sensitive to noise and bright light. I have severe anxiety and lack of motivation, also relieved by night time. My hands and feet sweat and are pale and clammy until night time. My limbs are pale during the day.

When I've tried the recommended salt and water intake in the morning, it goes right through me. My plasma sodium is alway on the high side in blood tests.

Big meals and heat don't give me symptoms.

Alcohol gives me tremendous relief from a lot of my symptoms, including brain fog. The veins in my limbs start sticking out and I feel much better.

Male, 49.

I would much appreciate any input I can get on this, thanks.

 

[Pistol]

@Pre - that is a question that probably cannot easily be answered without further information and should be directed at your doctor, since this forum cannot diagnose. Have you had a TTT? This is the first test you should have done, especially since you do not have certain symptoms. You state your BP stays the same - the TTT would show any changes while standing that you may not be aware of. Changes in BP while standing can help determining what type of POTS - if any - you have. 

8 hours ago, Pre said:

My blood doesn't pool in my limbs when standing during the day. I

In dysautonomia blood often pools in the abdomen and may not show in your feet.

You state that you have no body fatigue but have brain fog, lack of motivation, inability to focus - those are all signs of fatigue. Most symptoms you describe are common for POTS but can also indicate other causes, such as Vit B12 or Vit D deficiencies or low iron/ ferritin - has you doctor checked those? When I was severely symptomatic I was deficient in all of them and am better since on supplements. 

Are you seeing a cardiologist or another specialist for these symptoms? Depending on your HR and the results of a TTT a physician may recommend medications that could help you. Please see your doctor and make him/her aware of your symptoms and get the usual tests done to determine if you have dysautonomia. Good luck!!!!!

[Pre]

Thanks for your response Pistol.

I live in Canada and we don't have any centres specializing in Dysautonomia, and the doctors are a little behind on this matter compared to the US. But I will try to get an appointment with a cardiologist to get to the bottom of this. B12, Vit D, etc have all been tested and are within normal limits.

[jklass44]

25 minutes ago, Pre said:

Thanks for your response Pistol.

I live in Canada and we don't have any centres specializing in Dysautonomia, and the doctors are a little behind on this matter compared to the US. But I will try to get an appointment with a cardiologist to get to the bottom of this. B12, Vit D, etc have all been tested and are within normal limits.

Depends where you are in Canada. I live in BC and am traveling to Alberta next month to spend a weekend at the autonomic lab there (I think it opened in 2015, so it's fairly new). My cardiologist - who doesn't technically specialize in POTS but has an interest/knowledge of it - put a rush on the referral so in total it will only be a 3 month wait for me.  I'd highly recommend finding a doctor (there is a list of physicians on this site that may help you) that at least knows about dysautonomia because I went through so many that didn't, and having the doctor I have now has been life changing. 

Take it easy and best wishes!!

[Pistol]

@Pre - you do not have to have a specialist to get these tests done, any cardiologist can do them. Usually they do also an EKG and - if indicated - an echo of your heart. Most specilalists would want these tests - and of course the TTT - done prior to referral. Unfortunately dysautonomia is not easily diagnosed and most here had to live years with symptoms before getting a proper diagnosis. Take it step by step and take @jklass44 advice of checking the physician list   https://www.dinet.org/physicians/    Since there are few autonomic specialists most patients have to wait a long time to get an appointment AND usually have to travel quite a distance. I myself travel 8 hours one way to see mine, but there are patients from other countries flying in to see him, so it may be necessary to travel.  Be well!!!!

[bombsh3ll]

Hi Pre,

I am actually quite envious that you live in Canada as it is now the home of the renowned Dr Satish Raj! Look him up if you haven't already heard of him. 

I don't know how the healthcare service works there re seeing a specialist who isn't local to your area, but being in the same country is a start!

Good luck,

B xxx