Normal Flow Pots And No

[Daisy86]

I'm from Holland, so sorry if my English isn't perfect

I've been diagnosed with ME and POTS this year, I've been sick and fainting for as long as I can remember and I'm 26 right now.

I've been taking Lysine and it makes me feel a bit better, actually a lot better.

I've been reading about NO (Nitric Oxide) and that this could be the reason that I feel better when I take Lysine, because Lysine slows down the Arginine that produces the NO.

I do have vasodilation, so it fits the rest of the story.

So you would think that this would mean that I have too much NO in my body.

So is it safe to say that I have normal flow POTS?

My doctor didn't know much about the NO story, so that's why I'm trying to find stuff out myself, I think there's something there.

My doctor also thought that I have low blood volume. But I've read that normal flow POTS patients don't have low blood volume, is this true?

He also wants me to quit taking the Lysine after 2 monhts, but I'm afraid to get worse after I quit the Lysine.

Is there anything else that I could try to relieve my POTS symptoms?

I've tried stockings and taking more salt and fluids but they didn't help at all, so I think my blood is pooling in my abdomen.

I always need to go to the toilet after I've been upright for a short while, maybe that's a clue.

My gastro intestinal system gets upset a lot.

I've been told that I could try a diet with less carbohydrates and nitrates.

As you probably already understand, I'm looking for answers, I want to know everything there is to know about my health issues. Anyone that could help me with that?

[corina]

Hi Daisy, welcome to the forum! I'm from the Netherlands too. Don't worry, you're English is def well enough to communicate here (I remember worrying about that too when I first came here!).

It seems there are more folks in The netherlands who come up with a POTS diagnoses after being tested for (and diagnosed with) CFS/ME. I know there are several clinics in the Netherlands that test for that, do you minds sharing where you have been?

I was diagnosed at the LUMC in Leiden by Prof Van Dijk after I was referred to him by a very good cardio who had heard of POTS (really amazing as that was a little over 10 years ago when dysatutonomia was really unknown here in the Netherlands) and thought the symptoms that I had fitted that quite well.

I din't know much about NO so can't help you with that but there are some very informed people here who know a lot about that, so I hope they will chime in! Like you I (think) I have low blood volume and pool in legs and stomach. I'm on a med that isn't very much used in POTS here in the Netherlands (more often in the US and United Kingdom) which is called octreotide that has helped me a lot. It can have pretty severe side effects so it won't be the first med your doctor would want to prescribe but for me it works well (and not many side effects which is a huge bonus!).

Do you have a specific POTS doctor? Maybe you could have your NO levels checked to get an answer on that one? Before octreotide I was on a combo of meds to keep me as well as possible, like bb's, mestinon, ritalin (to stay awake during the day) and some more that I forgot. Also I wore compression hose and an abdominal binder.

Hope this helps and that someone with more knowledge about NO is able to help you with that!

Take care,

Corina

[Daisy86]

Thank you for your answer Corina.

I've been to the ME/CVS centrum Amsterdam, There they did several tests, including a tilt table test.

Half way through tests they told me I probably only had POTS, after the exertion test they said it was both ME/CFS and POTS.

Later on a doctor told me POTS was just a part of the ME/CFS, not a condition on his own. So I got a bit confused about that.

So I don't have a POTS doctor, just a ME/CFS doctor.

I could have a NO test done myself, but what would dat bring me if I don't have a doctor to do something with the results?

I hope someone can answer my questions about NO, I feel like I really need to look into that.

Since I took the Lysine my hr and bodytemperature dropped and I've been feeling better, so that must mean something.