cmruls

That's interesting. I don't understand the propranol?

Milk protein allergy is very common. 5 glasses a day? Try a vanilla protein powder/shake.

You need a full rheumatologic workup. Maybe need a bone scan. Do you have pain or where do you feel inflammed?

We may have over exposed ourselves to technological and chemical improvements with what we thought was helping us all along.

"chemicals, additives, preservatives"

This is what has changed over the last 30 years. We are a product of what we eat and do.

Thanks.

...analyzed by a tech, trained to recognize patterns that were indicative of either myopathic or neuropathic dysmotility. (Apparently, each has a distinctive pattern.)

So no definitive biopsy that showed myopathy or neuropathy. Wouldn't that be the definitive test? To what level of certainty can they correlate manometric patterns with myopathy or neuropathy?

How did they treat your son's dysautonomia and his motility problems?

Sorry for the questions, but it helps me understand.

Bruc,

...I think it's a commonly held belief.... which doesn't necessarily make it right.

Out of curiosity, how do you know that your dysmotility is due to myopathy and not a neuropathy? I think it's safe to say that most here have neuropathies secondary to autonomic dysfunction. My son had his confirmed via an antroduodenal manometry at Johns Hopkins.

I so agree with this statement. Just because it is a commonly held belief, doesn't make it right. So many times fallacies are perpetuated to the point that they somehow become/turn into true fact.

I don't understand how an antroduodenal manometry can distinguish between myopathy and neuropathy. I understand how it shows dysmotility but nothing more.

So that's not really hypovolemia, it is normal volume with pooling, mal-distribution? So lying down is normovolumia and standing the blood pools in the legs and you act like you are hypovolumic but you really are not?

So you want to be hypervolemic so that when you stand and the blood pools in your legs, the rest of the body will act like you are normovolemic?

Amitryptilline in higher anti-depression doses can worsen OI, but at low dose for dysautonomia this is a rarer side effect and is tolerated well.

But right now at 8:40am there are 777 active users, of which 9 members and 766 guests.

So what about all these people who don't have a diagnosis yet. They are where we were years ago.

So when I went to the big university top specialist who was treating me for something else, He say 'in my study of 10,000 patients. .....this works' but I tell him that in me it didn't work or I had side effects from his med. He just tells me back 'in my study of 10,000patients......this works'. As individuals we are not part of a study and we do not always fit exactly in their study. They can not treat individuals differently because that will invalidate their study. I have not been impressed with studies and evidence based treatment. I will continue to question and look for other answers/ideas while all along accepting all with a grain of salt.

I currently take these meds with good results. Coreg and bystolic are the only 2 BB's that cross the blood brain barrier and have an effect on the central nuclei in the CNS/ANS. They are used in much smaller doses than are used in HTN and heart patients. Small doses of amitriptlyine (non anti depression doses) are also used and can help sleep patterns and calm the ANS. If you have a jump in HR or a fall in BP when you stand then they will use small doses of midodrine to support the orthostasis.

Why is there over 100 members since April 11 on the members list listed as 'Validating'? What do they have to do to become validated?

I got my coconut oil from amazon.

Start low and go slow. Go up as needed for effect, but not so high as to get side effects. Cymbalta 20-30mg/d for 2-4 weeks then 20mg bid then I was on 30 bid. 60 bid is a big dose. The idea is to use a dose lower than they would normally use for depression. Different doses have different effects.

Cymbalta is a great med for dysautonomia but a terrible drug to get off of. Other options are amytriptline and coreg or bystolic. How is your sleep? To taper off cymbalta I got it in a liquid form and decreased by 1 mg every 2-3 weeks. Serotonin withdrawal is horrible, can even get symptoms for some time after you stop the med. I would not be afraid to go back on cymbalta but it frightens me to try and come off it.

I agree with the idea that the stomach acids need to work to help 'digest' the food eaten. This is why it is recommended not to drink water 20 minutes before and 60 minutes after a meal so that you don't dilute the stomach acids.

The yeast infection is a real problem. Antibiotics and sugars/carbs are a huge culprit. I take a teaspoon of coconut oil every day. Coconut oil has some very interesting properties. Do a search online for all the facts.

I take spoon of coconut oil daily. It is solid at room temperature.

This site is too important to let it go.

Chiropractors make me nervous.

Steroids makes my dysautonomia worse.

Where did he inject? How much total Botox did you get injected With? Some of your symptoms sounds like systemic botox poisoning.

My albumin is normal and I take a zinc supplement.

Which comes first or which causes which?, anxiety then Pots or Pots then anxiety?