hoping someone can help me with POTS question or OI

[hurtingallthetimet]

hello, on another thread i had mentioned the sympotoms ive had for years, dizzy when standing feel weak like i am going to passout, weakness when get grocerys, etc.

someone had menitoned it sounded like POTS, and im not sure but think they said OI, or IO?

ive tried to find info on how to know i plan on asking doctor but i have very bad headache, and stomach problems today and am not finding any good links about it...

anytime ive brought up my symptoms of dizzy, feel faint, tingle and chest soreness pain and weakness to the many doctors ive seen ive been told from the fibro/cfs, ive been told many times dehydrated alos and given fluids which i did feel some better...

can anyone tell me of a good website with info that is easy to read? i will bring up to doctor again but if it is pots are there any medications to help me feel better and cure from it?
thanks

 

[adreno]

http://www.dinet.org/pots_an_overview.htm

 

[hurtingallthetimet]

adreno thanks for the link...i copied an pasted and website other poster made{hope that is ok let me know if were not suppose to copy/paste from articles} below but it sounds very scary has anyone had this iv test done? im terrified of ivs.

"Some patients are given a drug called isoproterenol through an intravenous line during this test. Isoproterenol is used to test the sensitivity of beta-receptors. People who have POTS with beta-receptor supersensitivity and a hyperadrenergic state will generally have an exacerbation of symptoms due to this drug. Other drugs that are sometimes used in place of isoproterenol include nitroglycerin, edrophonium, adenosine triphosphate, ephedrine and nitroprusside"

 

[xchocoholic]

If you do a search on this forum for pmttt (poor man's tilt table test) you'll find instructions
on how to do your own. I started the thread with what I knew about it and others have added
to it. I use this method from time to time just to track my oi.

Btw, I used the term oi (orthostatic intolerance) when I should've used the term orthostatic hypotension (oh) to describe the condition where your bp drops upon standing. My bad ..

I just use an el cheapo wrist bp and hr monitor. So far it seems to work ok.

Tc .. X

 

[ahimsa]

Btw, I used the term oi (orthostatic intolerance) when I should've used the term orthostatic hypotension (oh) to describe the condition where your bp drops upon standing. My bad ...

xchocoholic, I think both terms, Orthostatic Intolerance (OI) and Orthostatic Hypotension (OH), are valid terms to describe a drop in blood pressure. My understanding is that they are used for slightly different problems.

Usually, Orthostatic Hypotension is used to describe the condition where there is a drop in blood pressure immediately upon standing. The person may feel dizzy, see stars, and so on. This type of drop in blood pressure is dangerous only if the person faints when they first stand up. I don't think it is usually as disabling as OI.

Orthostatic Intolerance is an umbrella term for different types of problems regulating heart rate and blood pressure. From the CFIDS Association web site (see http://www.cfids.org/about-cfids/orthostatic-intolerance.asp ):

There are many types of OI, at least two forms have been linked with CFS in research studies: neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS).

NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.

POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing. It is also known as chronic orthostatic intolerance, or COI.

They don't note it in the section above but in patients with NMH there may be symptoms after only a few minutes but the severe drop in blood pressure may come after a significant delay, anywhere from 10 to 40 minutes later.

They also don't mention the other names for NMH such as NCS (neurocardiogenic syncope), Vasovagal Syncope, and others (can't remember them all!).

A short list of symptoms:

The blood pressure and heart rate changes in NMH and POTS are accompanied by orthostatic symptoms such as lightheadedness, dizziness, nausea, fatigue, tremors, breathing or swallowing difficulties, headache, visual disturbances, sweating and pallor. Many patients develop swollen, bluish legs, providing evidence of blood pooling in the lower part of the body. These symptoms can become worse or be provoked more quickly in warm temperatures or hot indoor environments like saunas.

Hope this is helpful!

 

[ahimsa]

link to good article on Orthostatic Intolerance

Here's a link to an article about Orthostatic Intolerance: http://emedicine.medscape.com/article/902155-overview

There's a diagram at the end of the first page that shows different patterns of heart rate and blood pressure for different types of patients (normal, Vasovagal -- matches NMH as far as I can tell, COI/POTS, and dysautonomic).

Also, remember that a lot of the terminology is still a bit fuzzy and not all doctors agree. A snippet from one of the Research 1st articles about OI ( http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/ ):

There are many types of OI. When you round up experts who study the autonomic nervous system (as we did at one of our research symposia in the year 2000), they have trouble agreeing on the names and definitions for the various types of OI. (Does that sound familiar?) OI and other forms of dysautonomia are common in other conditions like MS and Parkinsons; it also occurs in less well-studied conditions like Ehlers Danlos Syndrome, Marfan syndrome and Shy-Drager Syndrome. So, its not unique to or diagnostic of CFS.

 

[taniaaust1]

can anyone tell me of a good website with info that is easy to read? i will bring up to doctor again but if it is pots are there any medications to help me feel better and cure from it?
thanks

Doctors who havent before heard of the disorder, may take you more seriously if they read about it from a place they know.

Info from John Hopkins

what is postural orthostatic tachycardia

http://www.hopkinsarrhythmias.com/patient/diag/tilt_pots.htm

more info on this from John Hopkins about POTS (mentions NMH too) and tilt table test
www.hopkinsarrhythmias.com/patient/diag/tilt_moreinfo.htm

Info on NMH (also mentions their CFS study) http://www.hopkinsarrhythmias.com/patient/diag/tilt_nmh.htm
...

both these disorders are types of OI found in ME/CFS

 

[xchocoholic]

xchocoholic, I think both terms, Orthostatic Intolerance (OI) and Orthostatic Hypotension (OH), are valid terms to describe a drop in blood pressure. My understanding is that they are used for slightly different problems.

Usually, Orthostatic Hypotension is used to describe the condition where there is a drop in blood pressure immediately upon standing. The person may feel dizzy, see stars, and so on. This type of drop in blood pressure is dangerous only if the person faints when they first stand up. I don't think it is usually as disabling as OI.

Hi ahimsa,

I see what you're saying. I was just trying to be specific. I think of OH as only pertaining to the drop in bp on standing and OI as the umbrella term for all OI. When myy OH disappeared last month, I took notice of the different terminology. I still have POTS and maybe NMH. I haven't tested myself for NMH yet but I feel like poo the longer I stand up.

thanks ... x

Ps ... great thread everyone. I think we nailed it ... : )

 

[nanonug]

hello, on another thread i had mentioned the sympotoms ive had for years, dizzy when standing feel weak like i am going to passout, weakness when get grocerys, etc. i have very bad headache, and stomach problems today... anytime ive brought up my symptoms of dizzy, feel faint, tingle and chest soreness pain and weakness to the many doctors ive seen ive been told from the fibro/cfs, ive been told many times dehydrated alos and given fluids which i did feel some better...

Your symptoms are compatible with histamine overload (for whatever reason). Do you tend to have more allergies than most people?