RichGotsPots

Well they point to endothelium is damaged as having messed up vaso responses. Meaning if you can test organs and find out if those local endothelium cell are damaged it might provide a clue to why regular med don't work the way they are meant to..

I haven't ignored it, but I tested the hyperventilation out and I wasn't affected either sitting or standing, so I ruled it out.

Also I'm leaning toward Pulmonary Hypertension, going to get it checked out, especially in a Tilt Table environment. It is probably a POTs PH, they might miss it. A lot of POTS people get told they have it one test and then not on another probably because of the variation and time of their flare.. Maybe NO level, maybe Mast Cell level, Mito levels etc.. whatever is causing their localized pulmonary BP to vary at the time.

Very interesting to say the least. How can i get my hands on the Vandy research? This all follows my theory which ultimately I tie to localized organ BP issues. There are so many factors and each act as a domino, the last domino is the local BP variations causing chaos. The question is diagnosing the BP variation locally and a similar way that we can check for postural tachycardia variations or how posteral hypo/hypertesion can be seen. Most tests are not taking in a Tilt environment especially outside of POTS centers..

For example I think with your main symptom being dizziness you need to be tested for intracranial hypo/hypertension by a Neurologist in this specialty. That isn't going to tell you why you have it if it's secondary but at least you can start a treatment to control it... if that's what you have. But again it might only show up while in tilt positions

Rich, but they do dialate the deep muscle vessels, that's parly what makes them lower bloodpressure. Their effect changes depending on which muscrinic fibers they are working on

Yes sort of, but that's my point. depends on the receptors they are acting on and BB cross the blood/brain barrier and so act systemically

Hi Everyone, as you might know by now I've been doing a ton of research into our syndrome. Now it's time I concentrate on making some good specialist appointments.

So I'm asking for everyone help so that we can all have a good list.

Can you make a list of doctors you've seen and the test we should all get:

Sample:

POTS Dr.- Tilt, etc..

Cardio-Echo, EKG, etc..

Pulm- CT, Pulm funct.

Endocron- Adrenal, thyroid, etc...

Neuro- MRI, MRA

Rheum-

Immunologist-mast cell test

Please also list special test, especially blood test and why they tested for that or why you thiunk they should

Thanks!

This all come has to do with my theory on localized BP issues. BB affect BP througout the whole body, they are considered Vasoconstrictors. Since they funnel throughout the whole body they constrict in organs we don't want them to constrict to. For example asthma people have to be very careful because a BB can make their lungs constrict. A person without asthma wouldn't have to worry to much but the constriction could take place in a another organ of your body that is hypersensitive to constriction..

Sue, I've had CT's of my adrenals and they were normal.

Which Dr. orders a CT of the Adrenal, I want to try to get all my CT's done at one time?

HI there! You guys are all so knowledgeable, figured I'd ask what the best type of doctor to see for testing for small fiber neuropathy??? My face and ears and limbs have bee tingling, going numb, and hurting for the last few weeks, and half my face and my one ear especially. It may be vascular, I can sometimes lay on one side and get the sensation to go away, and it seems aggravated by cold temps. I have Raynauds, and it feels similar to that. The docs keep making sure I'm not having a stroke and looking at me like I'm nuts. I'm stumped and really annoyed at this new symptom, I really want to know what it is.

I also fit the profile for MCAD, and asked my hematologist about testing for that, and he referred me on to an allergist he thought may be able to help. I'm back in the same loop I always get in, no one here locally specializes in POTS/Dysautonomia, so I get farmed out to a bunch of docs that end up sending me to other docs. My EP submitted paperwork to Vandi, and is referring me to a supposedly great local Endo who travels around the country lecturing on dysautonomia issues - so he can't see me until June.

Anyways: anyone know what specialty deals with MCAD and Small Fiber Neuropathy?

Thanks!

What's the name of the Endo who specializes in Dysautonomia? I've only heard of Cardio and Neuro specializing in it, so I'd be curious is other specialist do, that's what we all need

Also found this:

Another potential treatment is Coenzyme Q10,^[32] which a meta analysis of 12 studies found reductions in systolic pressure of 10–17 points and a reduction in diastolic pressure of 8–10 points^[33] with doses of roughly 200 mg/day.

So this MITO vitamin is having affects on BP

I'd like to take a poll to see what kind of tachycardia everyone has. I was told mine stems from my sinoatrial node (also commonly spelled sinuatrial node, abbreviated SA node or SAN, also called the sinus node).

Can everyone please list their HR in different positions when flaring and when not flaring.

My HR when not flaring is at rest 65-85, sitting 75-90, standing 80-100.

When flaring I'm at rest 85-105, sitting 100-120, standing 110-155

Thanks!

Just to give you an example of why you need to be careful with ANS and BP meds: Lets say a patient has asthma and they take inhale Albuterol, Albuterol this a b2 sympathetic med and it is not selective to the lungs. So from our mouth and our lungs it then travel through our bloodstream and has sypathetic affects on other parts of our body. For example in known to cause Tachycardia and that is because it is activating our sympathetic response in our heart, relaxing is so it can beat faster. For use POTSy people it's not a good affect...

Here is also a list I found of Antihypertensive meds, but remember most of these cross the blood/brain barrier and then affect our whole body instead which is not good because some parts of our body need vaso constriction and some need vaso dilation

http://en.wikipedia.org/wiki/Antihypertensive_drug

My Prayer are with her and your family, if there is anyway i can help let me know!

Has she had breathing issues in the past. My major POTS symptom is shortness of breath and it's very scary. I'm investigating Pulmonary Hypertension as a cause. Please make sure they check for that. What is your location, I'll look for a expert around your area that you can contact?

Rich

Hi Everyone,

I've been researching and researching non-stop and I've read through everyone's issues, every Dysautonomia website and it's all lead me to this post. I have a theory I'm working on and discussing with some Dysautonomia doctors. My theory only relates to our symptoms in a secondary nature because there are many primary causes and bundled all together it's causing different type of Dysautonomia. My theory unfortunately does not lead to a cure or even a cause but I believe it can help many of use with better treatment.

My Theory:

Our Dysautonomia symptoms are the result of imbalances in our blood pressure either systemically (through our whole circulatory system http://en.wikipedia.org/wiki/Systemic_disease), localized blood pressure imbalances (isolated to one organ at a time http://en.wikipedia.org/wiki/Localized_disease) and in some cases the imbalance of blood pressure disseminates to other organs (starts in one but spreads to others http://en.wikipedia.org/wiki/Disseminated_disease).

Explanation:

Our Autonomic Nervous systems (ANS) ( Para and Sympathetic) control our "flight or fight (FoF)" response but they also control our blood pressure using arterial sympathetic tonus which is separate from our FoF response. Our two ANS systems basically play a ping pong match to keep everything stable. Depending on what organ of the body either one (Symp or Para) constrict or dilate. I pasted examples below from Wikipedia. You will see Mast Cells, Blood Vessels, Digestive tract, Endo and Urinary, etc... Basically all Dysautonomia patient symptom areas.

Okay so that's the basics, here is the details. I believe that at the heart of our Dysautonomia symptoms are our Arteries. Depending what primary disease, illness, complication, whatever... they are effecting the pressure in our arteries. This pressure is then causing our symptoms. And depend what primary issue you have it can affect our pressure systemically, locally or by diffusion.

I believe there are two keys to lowering our symptoms.

1. We find the primary disease and we treat it. Unfortunately it seems that most of our primary disease have very poor treatment options and just are rarely curable and sometimes hardly manageable.

2. Is we locate our blood pressure issue, especially if it is localized and we get doctors to treat specific local blood pressure issues. Here are some of the local blood pressure issues I've found thus far.

A) Pulmonary Pressure- Breathing issues, faintness http://en.wikipedia.org/wiki/Pulmonary_hypertension

Intercranial Pressure- Brain issues- may cause dizziness, nausua, headaches http://en.wikipedia.org/wiki/Intracranial_pressure

C) Renovascular hypertensions- Kidney issues- http://en.wikipedia.org/wiki/Renovascular_hypertension

These are just a few of the more prevalent localized BP issues but there are others. Treatment is not great for BP issues because most medicines operate on a systemic level and go into our entire blood stream. And if a patient is has Pulmonary Hypertension but has systemic Hypotension then anti hypertension meds will help the breathing issues but exacerbate the systemic Hypotension. The hope is that they find meds that are selective to certain organs. They do have such meds for certain treatments and they are called "selective."

Also note worthy is that hypertension is related to Mitochondrial issues, Nitric Oxide issues, endothelium issues and a few more vascular issues. And there are new CT Scans (which I posted) that will help diagnose they BP issues in the future...

http://en.wikipedia.org/wiki/Autonomic_nervous_system

Blood vessels

Target Sympathetic (adrenergic) Parasympathetic (muscarinic) vascular smooth muscle in general α1:^[5] contracts; β2:^[5] relaxes M3: relaxes ^[4] renal artery α1^[6]: constricts --- larger coronary arteries α1 and α2^[7]: constricts ^[4] --- smaller coronary arteries β2:dilates ^[8] --- arteries to viscera α: constricts --- arteries to skin α: constricts --- arteries to brain α1^[9]: constricts ^[4] --- arteries to erectile tissue α1^[10]: constricts M3: dilates arteries to salivary glands α: constricts M3: dilates hepatic artery β2: dilates --- arteries to skeletal muscle β2: dilates --- Veins α1 and α2 ^[11] : constricts

β2: dilates ---

[edit]Other

Target Sympathetic (adrenergic) Parasympathetic (muscarinic) platelets α2: aggregates --- mast cells - histamine β2: inhibits ---

[edit]Respiratory system

Target Sympathetic (adrenergic) Parasympathetic (muscarinic) smooth muscles of bronchioles β2:^[5] relaxes (major contribution)

α1: contracts (minor contribution) M3:^[5] contracts

The bronchioles have no sympathetic innervation, but are instead affected by circulating adrenaline ^[4]

[edit]Nervous system

Target Sympathetic (adrenergic) Parasympathetic (muscarinic) Pupil dilator muscle α1: Contracts

(causes mydriasis) - Iris sphincter muscle - M3: contracts

(causes miosis) Ciliary muscle β2: relaxes

(causes long-range focus) M3: contracts

(causes short-range focus)

[edit]Digestive system

Target Sympathetic (adrenergic) Parasympathetic (muscarinic) salivary glands: secretions β: stimulates viscous, amylase secretions

α1: stimulates potassium secretions M3: stimulates watery secretions lacrimal glands (tears) β: stimulates protein secretion ^[12] --- juxtaglomerular apparatus of kidney β1:^[5] renin secretion --- parietal cells --- M1: Gastric acid secretion liver α1, β2: glycogenolysis, gluconeogenesis --- adipose cells β1,^[5] β3: stimulates lipolysis --- GI tract (smooth muscle) motility α1, α2,^[13] β2: decreases M3, (M1) ^[4]: increases sphincters of GI tract α1,^[5] α2,^[4] β2: contracts M3:^[5] relaxes glands of GI tract no effect ^[4] M3: secretes

[edit]Endocrine system

Target Sympathetic (adrenergic) Parasympathetic (muscarinic) pancreas (islets) α2: decreases insulin secretion from beta cells, increases glucagon secretion from alpha cells M3^[14][15]: increases secretion of both insulin and glucagon.^[14][15] adrenal medulla N (nicotinic ACh receptor): secretes epinephrine and norepinephrine ---

[edit]Urinary system

Target Sympathetic (adrenergic) Parasympathetic (muscarinic) Detrusor urinae muscle‎ of bladder wall β2:^[5] relaxes M3:^[5] contracts internal urethral sphincter α1:^[5] contracts M3:^[5] relaxes

[edit]Reproductive system

Target Sympathetic (adrenergic) Parasympathetic (muscarinic) uterus α1: contracts (pregnant^[4])

β2: relaxes (non-pregnant^[4]) --- genitalia α1: contracts (ejaculation) M3: erection

[edit]Integumentary system

Target Sympathetic (muscarinic and adrenergic) Parasympathetic sweat gland secretions M:^[5] stimulates (major contribution); α1: stimulates (minor contribution) --- arrector pili α1: stimulates ---

[edit]References

momtoGiuliana, with either your hashi or your pots do you experience upper body muscle weakness? My muscles are so weak they burn with lactic acid pain even from doing a minor activity...

I get the upper body weakness esp btwn my chest and shoulders. It can feel like even my own muscle tissue is too heavy sometimes. Like I did 1000 push ups..

I just got them and so far they are great and warm. They are made by Tempur-pedic. They have a double layer of memory foam inside. They were $60 but without the hard bottom they are $30. So far I recommend them

http://www.tempurpedic.com/Mens/Tempur-Pedic-TEMPUR-Mens-Cloud-Moc.asp

does the endo test for those? If so what other endo tests should I ask for. I have this problem, I can go 15+ a day and I drink almost a gallon/day of water

did you ever try Dramamine 2 for dizziness? It is much less drowsy

University of Chicago med, has one

John Hopkins has one

Columbia Presbyterian in NYC

Overlook Hospital in NJ

^ - Also back with my parents while i get this sorted so i can relate. I got DI diagnosed via an endocrinologist. You will need to do a dehydration test. DDAVP raises BP so all its a good tool if you need it.

What is DI and DDAVP?

Just read the material on Toshiba's website and you'll see it's not just higher resolution if higher slicing. If you have a 32 slice machine and you up the resolution it might be not good but this is high slicing so it gets a much better, clear image.

Yup, and so I'm trying to actually tie together how it's affecting us. I think it's mainly affecting us through localized hypertension that is varies in a similar to how our heart rate varies on postural positions. By knowing that then they can start giving us treatments that target that. For example by knowing we have a fast sinus heart rates they can give us sinus selective meds and lower it. The problem is that almost every Dr. I've talked to or read about has been prescribing BP medicine to combat heart rate issues and even lowering HR issues doesn't help that much on the over systemic level. So far I've identified 4 different localized hypertension illnesses. Urinary, Ardenal, Pulmonary, and Neurological. each of these cause different issues. Each of them is tackled by different types of doctors all prescribing different types of meds. If we cure just cure Mito issues maybe they would all clear up, except they are so far from that, that they are actually prescribing holistic cocktails... For now I think it's about identifying which local BP issues we have and tackling them one by one and maybe getting lucky..

There wasn't any handbook or any mention of a 90 day trial, but I see I couldnt have FMLA protection with them, i might go after the previous company though i have to talk to a lawyer. I still think protection or no protection it will be bad PR for them if tell the press they fired a seriously ill person, maybe they will settle..

Here is the full abstract of the study http://hyper.ahajournals.org/content/51/2/412.full . Many of us are believed to have Mitochondrial Deficiencies and we are not sure if it is primary or secondary. But it could play a role in a lot our fatigue and other symptoms. I also have a theory that many of our symptoms are a result of what I call localized hypertension. Just like some of us have Orthostatic BP flucuations, I believe some other mechanism make our BP irregular in different parts of our bodies. And if one of us have a symptom that bothers us more it's because of the irregularity is localized to an area of the body that causes that type of symptom. This all ties into autonomic dysfunction. Even if one of has dysfunction because of a completely different illness than from another person, treating this local fluctuation might be a key, might, just a theory so far...

• Mitochondrial Dysfunction
  

Mitochondrial Dysfunction in the Hypertensive Rat Brain

Respiratory Complexes Exhibit Assembly Defects in Hypertension

The central nervous system plays a critical role in the normal control of arterial blood pressure and in its elevation in virtually all forms of hypertension. Mitochondrial dysfunction has been increasingly associated with the development of hypertension.

Perspectives

The central nervous system plays a critical role in the normal control of arterial blood pressure and in its elevation in virtually all forms of hypertension. Our findings suggest that, in already-hypertensive SHRs, the brain respiratory complexes exhibit previously unknown assembly defects. These defects impair the function of the mitochondrial respiratory chain. This mitochondrial dysfunction localizes to the brain stem and is, therefore, likely to contribute to the development, as well as to pathophysiological complications, of hypertension. Interestingly, mitochondrial dysfunction in the central nervous system has been extensively investigated for several neurodegenerative diseases, including vascular dementia, Alzheimer’s, Huntington’s, and Parkinson’s disease.^34–37 It is striking that the dysfunction that occurs in these diseases shares many molecular commonalities with that found in the current research in the context of hypertension. Future research should further explore the emerging link among hypertension, mitochondrial dysfunction, and neurodegeneration and the cause-effect relationships.

Hi Everyone,

All of use take tons of tests which exposes us to radiation. Sometimes these test don't show enough and we have to do more invasive procedures. I found want to help everyone reduce this...

For example I'm checking out my lungs for scarring, hypertension and clotting and I read about High Resolution CT scans. I asked my Lung Doctor and he says," all CT scans are the same, it's how they view them that makes them high resolution," He is very smart went to U. of Chicago Med and fellowed at John Hopkins. But he obviously does not know a thing about radiology.

All CT scans are not created equal and they are not high resolution just because of the way they are viewed. Most CT scanners are 16, 32 or 64 slice and no one tells you what type they have.

But doing a ton of research (as usual lol) I stumbled on the latest CT scanner technology. They make 64 slice look like Atari Vs. XBOX 360.

Toshiba Medical makes them and they are called Aquillion One or Premium they have 320 slice, that is 5 times more powerful imaging and they expose you to less radiation! They have 3D and 4D imagine! They are so powerful that radiologist can use less contrast dyes to view arterial images. They also make completely new type of imaging available to check blood flow and and other things in 3D.

Only one problem, they are very expensive machines, the 1st ones that came out in 2007 were $1 million plus. For us that means there are very few hospital that have them in the country. John Hopkins and U. of Chicago were among the 1st. There is only one in my state of NJ. And they are not easy to find.

My Suggestion is that you google Aquillion CT and your state. What I'm going to also do is wait on getting my scan and go to a neurologist and other specialists and get more CT scripts so that I will end up getting many things scanned in one shot. Also I'm going to go use doctors that belong to the hospital that uses this scanner, that way they will be giving their own hospitals business, and they will know about it (might even suggest it themselves) and it will be easier to get the scripts

http://medical.toshiba.com/products/ct/dynamic-volume/clinical-cardiac-01.php