yogini

Hi, I wouldn't assume that your arm pain in one shoulder is related to dysautonomia.  I would go to a doctor and get it checked out separately as you may have an injury.

Dysautonomia symptoms change sometimes and if it is positional it definitely seems like it could be a POTS related symptom  You doctors can advise best.  It seems they did take you seriously if they kept you overnight for 2 nights.   I agree with the other post - it would be best to try to investigate this through your doctor.  If it avoids a trip to the ER maybe the referral could be expedited.  Also your doctor could investigate other causes besides the blood clot.

Have you tried eating smaller meals more frequently to see if this helps?

10 minutes ago, joiedevivre said:

I didn't measure my bp. But I don't believe my bp is a measure of my symptoms anyway. In other words, I don't believe it's a perfect measure of how much blood is pooling/how much blood my upper body is getting. Maybe it is in some sense. For example, my standing bp might range from 75-95. Within that range it seems to indicate nothing. Maybe I would feel good if my standing bp was 120, but it's never been anywhere near that. And I can feel universes  different and have the same bp. I can feel like death with a bp of 90 one day, and another not feel like killing myself with a bp of 90.  The only thing that makes a difference to me is sleep,  exertion, and my period. 

mestinon increases BP so you could tell if it had effect by measuring your BP.  i agree that it doesn't necessarily mean that your symptoms will improve on any given day.

Have you been diagnosed with dysautonomia?  Are your blood pressure and heart rate ever not normal?

Should work immediately.  did you measure your BP before and after taking it?

Generally dysautonomia is diagnosed by a 30+ sustained increase in HR above your resting HR or a sustained decrease in your BP above your resting BP.  Your doctor could diagnose you best, but the test result you posted does not seem indicative of dysautonomia to me.  We have good days and bad days so some people with dysautonomia don't test positive on the day they are tested.   You should be able to measure the increase (or decrease) at home on another day, though.

2 hours ago, peachychou123 said:

My heart rate is usually around 80 supine/120 standing (this rises to 100 supine and 140+ if I've eaten carbs that day lol) My blood pressure is weird to be honest. It fluctuates. I have heard midodrine can cause supine hypertension, so that's why as much as I want to try it, I will need to consult with my doctor first. I guess he may suggest taking a BB in addition. He is more concerned with getting my HR down. 

In POTS the heart beats faster to maintain blood pressure.  Often increasing blood pressure and blood volume will help reduce the heart rate.  Since midodrine only lasts a few hours people usually only take it in the day, so that it is out of the system by the time you are lying down.  There are other medicines and treatments for dysautonomia, though.

Have you measured your blood pressure and heart rate?  Lightheadedness usually comes from low BP.   If you were taking salt and water before you might need more now (or a medicine which increases your BP like midodrine as you mention).  Compressions stockings can also be helpful

Are you measuring your heart rate and blood pressure when it happens?

Dinet ad Dysautonomia International have lists of doctors experienced in Dysautonomia. I would check one of those lists and try to work with a Dr locally.  Clinics are not great with ongoing care so you will need to find a local dr anyway.  There is a lot of good information so you can read and direct your dr if you find a good local dr. It is a lot of trial and error with drs and medications. On the clinic if you can get an appointment and it’s covered by your insurance it doesn’t hurt to go, though.

8 hours ago, Eraena said:

It isn't really orthostatic hypotension. The lightheadedness is every few seconds, ranging for mild-severe, and can happen in any position: laying, sitting, standing and walking. I had a carotid doppler done back in August, which showed low velocity blood flow. I also had my heart checked to make sure it wasn't cardiovascular. My doctor thinks it could be something deeper, so he wants me to see a neurologist and a endocrinologist.

In Dysautonomia you can feel lightheaded in any position.  Glad your doctor is running thorough tests.

Does your blood pressure drop when you stand?   You might have another form of Dysautonomia, not POTS.  Generally you have to have salt/water consistently over time and then your BP will increase a little.  Increasing salt and fluids only helps a little - it doesn't necessarily totally stop low blood pressure or flare ups of your symptoms.

Interesting. I also have a much easier time eating later in the day. I think many people with POTS feel terrible int he am and start to feel better later in the day. For me that is definitely true and that's why I can handle eating more (and walking and doing errands) later in the day.   It's helpful to figure out your patterns and follow them, whatever they may be.

On 10/22/2018 at 6:15 AM, Pistol said:

Here is a curious observation I made: when my POTS symptoms are bad I always urinate excessively. When I get IV fluids this stops and I urinate a lot less, more like a normal person. So: does the increased urination cause the POTS to worsen or does the POTS cause the increased urination? … Also: in "normal" people IV fluids would cause increased urination - why is it opposite in POTS patients? 

I just found an article about polyuria ( excessive urination ) that lists POTS as a primary reason for polyuria!!!!

I think the POTS flare up causes urination. Your body is in fight or flight mode. A normal reaction in that state is to have to go to the bathroom.

If you have a 30-50 bpm sometimes it sounds like POTS. If you are going to see a specialist it might not just be one appointment - it would be multiple appointments and testing to get better. If you can get it covered under insurance that would be the best/easiest thing.  You can try reading a lot of information on the forum about the different doctors and treatments - and eventhings you can do at home to feel better.

I had a sudden onset of Dysautonomia very similar to yours.  I would guess that most of your symptoms are related to your Dysautonomia especially if you were perfectly fine before. Whether or not you have POTS actually does not matter as much because many of the treatments for Dysautonomia are the same. I agree with some of the others that a Dysautonomia specialist would be helpful. It sounds like your doctors are a bit confused! A knowledgeable Dr can help you find medication that helps your symptoms. When  you start to feel better, then you can exercise and be on your way to recovery. You can find lots of good info here on the forum.  I hope you feel better soon.

. If you are having high BP sometines and low BP other times it is probably worth checking with your doctor.  I don’t think having lots of salt at night would usually cause you to have high BP in the morning. It usually builds up over time and it is the combination of salt and water over time that increases BP.  

if you are peeing out so much your salt to water ratio might not be correct.  Drinking water and salt isn’t the same as an IV but if you experiment a bit you might be able to find a combo that keeps you hydrated. 

You may want to search through old posts and you will find lots of examples. Someone else just posted a new thread about fainting while sitting or lying down. There are also many posts on waking up in the middle of the night with tachycardia.

3 hours ago, jeff_jefferson2 said:

Can you elaborate on how you were diagnosed and what your episodes are like?

What are your episodes like and how were you diagnosed?

I was diagnosed through the tilt table test. That is the most common test for Dysautonomia. It seems extremely common for people with POTS to have tachycardia in all positions, not just upright.  I haven’t heard of too many people, if any, that only get it when they are standing.

10 hours ago, peachychou123 said:

Can I ask which thorough tests you mean? My doctor doesn't seem to want to investigate anything. They did my thyroid, kidney function, liver, infection levels, total blood count, troponin etc at the hospital and said everything came back okay. 

My doctor blames everything on anxiety and an overactive imagination tbh. When I told them I was lightheaded they threw some anti vertigo tablets at me despite the fact my sitting HR was 119 and I stressed to them it was a feeling of faintness NOT spinning or nausea. They wouldn't even properly acknowledge the fact I have POTS. I am lucky they even referred me. I'm hoping the cardiologist will listen to me. 

I meant a full cardiac work up from a cardiologist- echocardiogram, stress test, etc

If it is a new chest pain I would go to the doctor whether or not it gets worse.  The doctor can run more thorough tests than the hospital. It's not worth worrying/being scared.

Sorry for your ordeal.  I think it is somewhat reassuring that the hospital sent you home, but it probably wouldn't hurt to follow up and get a checkup with your doctor.  That is much better than having to go to the ER again,

Atenolol takes a while to get adjusted to.  The first couple of weeks are the worst.  I felt like I had lead feet.  But that went away.  The fatigue was also there for me, but it also got a lot better over time.  You can also measure your blood pressure and if it's low take extra salt and water.  You might be able to tolerate caffeine with the beta blocker, which could help to give you energy.