Hi Jana,

with the passing out you could have ncs (neuro cardiogenic syncope - fainting due to a drop in blood pressure on standing). Or it could be NMS which is neurally mediated syncope which is low bp causing fainting. Dont quote me on this my brain is a bit fuzzy on this and you would need to check the dinet site.

I would do the TTT poor mans version as soon as you are able and if you dont already have one get a BP monitor.

Keep a diary of how you are feeling and note what your bp is at the time. Remembering your brain will feel a drop in bp before its measured with a bp monitor and it can be up to 20 mins before your bp monitor will show a change in pressure. You can also have a normal BP but have poor cerebral profusion ( poor blood flow to the brain) and it can cause brain fog. Hence why with dysautonomia you can feel dreadful but still have a normal bp!

The good news is Mestinon (I cant remember if you take it apologies) is used in people with low bp and syncope (fainting) to boost their bp when standing. Mayo clinic discovered this and quite a few people on Dinet use mestinon - small world huh?

I hope this helps Jana

Hugs
Rach

YES, Rach!! It does help!! Many thanks!!

Hi Jana,

I'm glad my rambling posts are helping!

Weak leg muscles can also be a symptom of POTS or dysautonomia, so add that to MG and thats a heap of trouble!

As I say google Pots place or Dinet and you will find a wealth of info. Most people dont just have Pots the have other autonomic nervous system issues too and its all covered including mast cell activation disorder. They are a really friendly bunch and will answer any questions you may have.

If you are on facebook there are loads of groups on there too. A great blog on the subject of dysautonomia is one called Living with Bob.

Any questions please give me a shout hun!

Hugs
Rach

Ok, so I did the poor man's tilt test yesterday. I had taken TWO Mestinon tablets a couple of hours before -- a total of 120 mg...............so, I'm thinking it is possible that my results aren't completely accurate (???).

Yesterday morning, I took my BP -- 110/60 and heartbeat was 59. I was actually in a little pain (gas), so I think this is why my BP was higher than normal (100/70 to 90/60). Here are th results of my test:

• While still laying down -- BP 130/88, HR 59
• As soon as I stood up -- BP 129/76, HR 62
• After 2 minutes -- BP 129/82, HR 60
• After 5 minutes -- BP 120/78, HR 62
• After 10 minutes -- BP 121/77, HR 61
• After 20 minutes -- BP 124/79, HR 61

I got SOOOOO tired of just standing -- and I was "weaving" all over the place to stay balanced -- I usually weave when trying to stand still, MG??? I dunno -- to me, it looks like my test results were ok. Of course the Mestinon seems to have raised my BP (????).

I looked up the NCS and NMS -- I have some of the symptoms of each, but not all.....maybe not a high enough percentage.

Confusion abounds in my poor head!

Again, THANKS Rach!

Mestinon does not raise my blood pressure. Also, I am pretty sure that it actually slows my heart rate down. If it raised my blood pressure, I couldn't use it because I have a terrible time keeping my blood pressure under control.

You made me LOOK, Celeste!!

Found this:

The drug pyridostigmine (Mestinon) can raise your standing blood pressure without increasing your blood pressure while you're lying down.

http://www.mayoclinic.com/health/shy...ents-and-drugs

Isn't that ODD????? Before yesterday I had NEVER taken my BP while standing OR while lying down. I usually only take 90 mg of Mestinon -- had increased to 120 because I thought it might help my stomach.

I don't "think" Mesty has affected my HR -- mine has always been pretty SLOW.

Thanks, Celeste!

Hi Jana,

You need to do the poor mans TTT after about 12 hours fasting including liquids and no mestinon - if you can do that safely!!! That would give you a more accurate result. But as you are taking large doses of mestinon I wouldnt do it without a Drs supervision to be safe.

The weaving is your bodys natural way of keeping the blood from pooling in your legs - quite natural in dysautonomia and EDS.

I would say your heart rate is on the low side 60 should be the lowest maybe lower if you are an olympic athelete that maybe something you need checked. I know I feel absolutely horrible at 54bpm (lowest ive ever recorded it at). Its weird your heart did not even respond to the change in posture which is 15-20 bpm raise from your resting rate (it then drops back down again very quickly in normal people).

But I am not a Dr and this is only stuff I have picked up whilst researching my own illness. I dont want to look as if I am giving medical advice because I am not qualified to do so!

Something is definately going on hun. I would suggest asking to see a cardiologist that knows about dysautonomia. On Dinet they have a list of Drs if that helps.

Hugs
Rach

Jana, Your BP looks just fine. Not even a sign of over hydration or dehydration.

Green tea might cause more GI issues. So hold off until you've been thoroughly checked out! If it's alkaline, it might do more harm. Always try only one thing at a time or you won't know if it's helping or hurting.

Have you brought the "weaving" up to your neuro? Have you videotaped it? I think a neuro would be the one to run it by first, IMO.

With your migraine history . . . have you been looked at for any possible clotting disorders?

You have good doctors, so I'm sure they can help you figure this all out.


Annie

Thanks so much, Rach! I'll start looking for a cardiologist -- or see if my neuro can recommend one!!

Rach, you may not have the medical degree, but you are pretty darn smart!! Being sick sort of makes us GET educated about all of this stuff, doesn't it???

Thanks, Annie!