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What Kind Of Pots Do I Have?


mjan

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OK... I have had 2 TT tests and the first cardiologist said it was positive BUT..added that my BP first skyrockets then drops...HR went up..not sure how much..high enough to be pos TTT. I had that drug they give you that induces the symptoms..then all the terrible symptoms plus near syncope. I DO NOT faint...just feel like I will lose consciousness and get soo weak that I cannot stand or sit up any more. But this is only when its really bad. I was finally put on a beta blocker...but it does not control the tachy/BP symptoms.

OK.. had the Autonomic testing by a specialist who confirms I have an autonomic disorder then he never sees me again.. tells me to use clonidine but does not call in the RX wants the PCP to do it and to use salt..drink lots of water via his RN. Salt? When I have uncontrolled hypertension? He lowered my beta blocker and my hypertension tends to be better now. I was glad to FINALLY have a diagnosis for all the years of not knowing and sooo many ER visits with no help.

OK..finally my PCP gets a hold of this neurologist/autonomic specialist for not following me..and he sets up a f/u appt in July (testing was early feb09)

But this is what happens.. I get tachy SITTING..usually when I am at rest..or shortly after eating. My HR does not go up on standing or it takes awhile to climb up if I stand.

AND now the hardest part is getting in the heat...esp in my car. INSTANTLY get tachy.. sick to my stomach..weak..you know the drill. I BLAST the AC and start to imrpove but sometimes it takes awhile. I dont usually take the Clonidine unless the symptoms get really bad and won't dissapate on its own.

What should I ask the autonomic specialist in July? What kinds of things should I know rom him. What kind of autonomic disorder do I have?

Thanks for your help

Jan

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Other helpful questions could be:

1. Do hyou experience postural hypotension or hypertension?

2. Do you have low blood volume?

3. Are your feet and hands warm, red and bloated or cold, blue and clammy when you are symptomatic?

4. Where do you seem to pool (if you pool at all which is also a debate)?

5. NE levels on tilt?

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Other helpful questions could be:

1. Do hyou experience postural hypotension or hypertension?

2. Do you have low blood volume?

3. Are your feet and hands warm, red and bloated or cold, blue and clammy when you are symptomatic?

4. Where do you seem to pool (if you pool at all which is also a debate)?

5. NE levels on tilt?

Thanks for responding..hmmm..

This is where I get confused and NEED to talk to this doc to explain my autonomic testing results with me.

I have had uncontrolled HYPER tension..and when I get tachy.. my BP usually goes UP..high then higher..then comes down as I rest.

I do not know about blood pooling or low blood volume. Have no clue.

I do not know about my hands and fees when I am symptomatic. Most they are ok..but I have carpal tunnel and they go numb often or one hand may become ice cold.My feet are warm..but sometimes go icy cold. Who knows??

I was told my autonomic results were in the mild end BUT I do not sweat now and that is why I cannot tolerate the heat.

All I know is that my symptoms are increasing over the years..but come in clusters..but with daily symptoms complicated by other conditions I seem to have.

Whew.. this is all so confusing..

HISTORY OF SYMPTOMS:

unexplained tachacardia..usually at rest..sitting

followed byelevated HIGH BP/HR

blurred vision sometimes with tunnel vision often with above symptoms

sudden weakness..lightheaded..feeling syncope but do not faint..rather I go limp..unresponsive..but can HEAR but not always.

Sometimes have seizure like tremors through out my body..can HEAR..but look unresponsive. ALWAYS starts with tachycardia.

uncontrolled hypertension history..beta blocker helps now seems to make BP worse..usually around 130/85 to 194/110 then will drop down to 120/70

heart rate is usually in 60-70s then up to 90s even on BETA blocker..but used to get to around 120 at rest. (not standing)

Very little ability to sweat now..HEAT makes me sick instantly..tachy..nauseated..lightheaded

DRY eyes..mouth..ears. (sicca syndrome)...and now they think esophagus

short periods where I lose memory for seconds to a minute but look alert..still geting a DX for what that really is.

With these episodes I lose muscle control..cannot keep eyes open..look unreponsive..but can HEAR

just cannot remain alert or to keep eyes open..or move my body..again always starts with TACHY/BP esculating

Trouble with swallowing..about to have an ENDOSCOPIC eval

daily spasticity in legs and back muscles..spasms in my rib cage

2 hernias..hiatal and umbilical

asthma like coughing..chronic..but lungs usually clear

Chronic fatigue .. work then rest rest rest

and MUSCLE fatigue and WEAKNESS often with chronic pain

Internal tremors..even inside MY HEAD

tingling..buzzing electric like pain in legs

multiple lesions in the brain..MS was just ruled out.

Cognitive and speech problems.

Good nutrition program has corrected my balance issue and helped to decrease these "episodes"

BUT I am 60.. and this is soooo CHRONIC!!

ENOUGH!!!

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Ask what caused your POTS (the most common type is neuropathic POTS from nerve damage), so you know for certain you have primary POTS and not POTS caused by another disorder. Then, if he confirms that you have neuropathy, find out if your neuropathy is central or peripheral. Mine is peripheral, that is, the neurologist at Mayo was able to determine through the autonomic tests that I didn't have nerve damage in my brain, or other more central nerves like the vagus nerve. He said that was good news because the peripheral nerves heal themselves faster. Make a list of all your symptoms (starting with the most troublesome) and go over them with the doctor so he can tell you what they are caused by. And I always try to bring someone with me! Go over your main issues with your friend ahead of time so they can help advocate for you to the doctor if you get overwhelmed. They should also bring pad and pen to take notes. Find out what he thinks of the prognosis of your dysautonomia. Ask why he wants you on clonidine (so you can explain it to your local doc) and what to expect if it helps you or doesn't help you. Find out when you need to come back in for re-evaluation.

Just my 2 cents! Janie

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Thanks Janie for your 2 cents are worth a million to ME!!

I am still getting diagnosed by my multiple problems=multple specialists. So far my PCP..God Bless her..knew enough to send me to this neurologist who specializes in autonomic disorders. It was HER persistence that got me another appt for follow up.

But I have other problems that may or may not be related. I do think I have some kind of nerve damage or neuroptathy. I do have brain lesions and some on my brain stem.

Thanks again Jan

Edited by flop
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I have adrenergic POTS in which my BP isn't always low but sometimes is higher.

I also have the same type of near syncope episodes where I loose muscle control, go limp, can still hear but not respond. I look like I've passed out. I have some central nervous system involvement with my dys.

Smiles

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I guess the problem is that the opinion as to the causes of POTS are still being debated, even though most specialists talk about them otherwise.

As an example some leading specialists in POTS believe that hyperadrenergic patients are just displaying a similar reflex response to other patients to blood pooling and their problems are not purely hyperadrenergic.

Even in patients where the norepinephrine transporter was found to be faulty, it is unclear whether this is the cause or consequence of POTS (through profound changes in norepinephrine release or through alpha/beta hypersensitivities). Also these patients did not exhibit super-excessive levels of norepinephrine and it appeared that their nerve firing rates were uncoupled with the levels of NE (nerve firing super high, NE slightly high).

Also another factor that make explain the differences in presentations could be polymorphisms in the genes that regulate endothelial nitric oxide, beta receptors and endothel. 1, etc. So it could be that all POTS patients have one cause, but their presentations are different depending on the other mechanisms involved in orthostatic circulatory changes.

So its not really that clear yet, but it is the question that will ultimately lead to far better treatment options for patients.

the problem is that symptomatic profile doesnt really help readily in determining whether your POTS is caused by sympo-excitation, other causes or from partial neuropathy effecting vasoconstriction.

Some of the suggested forms of primary POTS are:

Low Flow POTS - elevated angiotensin II levels lead to reduced bioavailability of nitric oxide. This leads to excessive vasoconstriction, peripheral resistance and reduced blood flow. Symptoms are worse during menstration, total blood volume is usually significantly decreased and BMI seems low in these patients.

Normal Flow POTS - a form of POTS where pooling is found exclusively in the stomach region. In response, patients exhibit excessive peripheral vasoconstriction to compensate. Cause unknown but many speculated.

High Flow POTS / peripheral neuropathy - the most common form of POTS caused by either an autoimmune or autoinflammatory (or possible nerve injury) that results in reduced expression of norepinephrine receptors in the lower body. This leads to pooling in the lower body on standing, and an excessive norepinephrine and beta receptor activity in the uper body to compensate. Mestinon may also be helpful by increasing receptor activity and thus lower body vasoconstriction.

Norepinephrine transporter deficiency - Reduced expression of the norepinephrine transporter would result in norepinephrine remaining at the synaptic cleft, increasing vasoconstriction, peripheral resistance and possibly even blood pressure on standing, and leading to tachycardia and excessive cerebral vasoconstriction.

Alpha/beta hypersensitivity - here the results are similar to NET deficiency, but it caused by oversensitive receptors.

Parasympathetic dysautonomia - more to come on this one...

Hyperadrenergic presentations could suggest distal denervation - your body is responding to partial denervation by making the remaining ones hypersensitive. Or parasympathetic withdrawal is resulting in sympathetic activity being unapposed???

There are more that I have forgotten. Co2 may have a role in some.

Edited by flop
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WOW.. YOU are amazing!! How did you learn all this? Thanks so much. I am struggling to understand it all..but I will try

Edited by flop
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Just some more information in case it helps anyone.

I started Mestinon and wasn't sure if it was doing much. So we increased my dosage and I had the overdose side effects for a day (horrible but most of us are used to that kind of stuff unfortunately!).

I was off it a few days after and really noticed my symptoms flaring up! So I'm slowly ramping up my dose again and feeling a bit better.

"High Flow POTS / peripheral neuropathy - the most common form of POTS caused by either an autoimmune or autoinflammatory (or possible nerve injury) that results in reduced expression of norepinephrine receptors in the lower body. This leads to pooling in the lower body on standing, and an excessive norepinephrine and beta receptor activity in the uper body to compensate. mestinon may also be helpful by increasing receptor activity and thus lower body vasoconstriction."

So I wonder if I have this guy...my sister seems to have POTS symptoms, too, though, but I guess we could be genetically inclined to get it from some trigger that causes it...

I'm sure it'll be trial and error for you with medications. Usually you have to try a variety of stuff unless you get really lucky.

I wish you well!

Edited by flop
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