ramakentesh

may be of interest:

Apologies if any of these have been posted previously:

Modafinil is good stuff - increases blood pressure but not heart rate in POTS:

http://conference-cast.com/HRS/common/presentation-detail.aspx/8/28/1040/6057

Acute SSRI and what id did to POTS:

http://jop.sagepub.com/content/early/2013/11/13/0269881113512911.abstract

Low vitamin B12 in a population of POTsies:

http://www.hcplive.com/articles/Low-Vitamin-Bsub12sub-Linked-to-Postural-Orthostatic-Tachycardia

POTS who faint have impaired sympathetic-mediated peripheral resistance:

http://zebrasoup.me/2013/11/16/certain-cardiovascular-indices-predict-syncope-in-the-postural-tachycardia-syndrome/

general one:

• http://circ.ahajournals.org/content/127/23/2336.full

I worked it out - it was actually full. sorry.

Im not that antisocial! But maybe it happened by accident. I pmed you my email address anyway.

No caffeine? I have POTS and i couldnt live without caffeine! But initially i was in the hyped up tachycardia phase and couldnt handle it - now im in the fatiguey dizzy land and its a big help.

Chocolate was being investigated by the Baker Institute in Australia for lowering blood pressure over time (cocoa I mean). know idea if that is why.

Thanks. Just dropping by. I had a few studies to post. Ill stop banging on and post them

Its good stuff. But tolerance becomes an issue after about two months. Im no longer on it but its worth a shot for anyone struggling (I mean more than usual) Tlak to a doc and all that.

Not sure about EDS. Ive got other weird stuff going on occasionally but I gave up trying to get the doctors to give me a name for it

Weird - my inbox seems empty.

In most autoimmune diseases there are usually a percentage of patients that are 'seronegative' - that is having the disease but without measurable antibodies.

The specific autoantibodies that cause autoimmune small fiber autonomic POTS (neuropathic POTS with patchy abnormal QSART) havent been identified other than in the gangliopathy (and these autoantibodies werent found by other researchers in any POTS patients). Recent studies in POTS also identified autoantibodies to specific alpha 1 adrenoreceptors and other strange locations. In some conditions small fiber neuropathy was caused by inflammation from the cytokine TNF alpha rather than antibodies.

What's the point of my post? Well QSART or skin biospy abnormalities with an acute onset may be indicative of autoimmune POTS even where no autoantibodies are identified.

I havent tried IVIG but do have small fiber autonomic neuropathy. its hard to get in Australia.

I have to take meds often after a swim but it gets better over time.

When i swim hard and havent for ages I get out and feel like my whole body is being pulled down by weights.

It apparently promotes low blood pressure despite improving orthostatic tolerance while in the pool.

I think its worth boosting vitamin D if autoimmune POTS is suspected. In other conditions vitamin D levels can dampen autoimmunity.

Some of those were conjectural and i wouldnt suggest self-administration.

Main meds popularly used are those that increase alpha 1 receptor activity or boost synaptic norepinephrine:

- midodrine

- phenylephrine

- pseudoepherine

Those that also vasoconstrict:

- dyhydroergotamine

- caffeine

- synephrine (?)

Those that increase blood volume:

- Florinef

- natural licorice root

Those that increase acetylcholine at the synaptic cleft allowing increased sympathetic and parasympathetic activity:

- mestinon and other acetylcholinesterase inhibitors

Those that decrease autoantibodies:

- IVIG

- Para whateveritscalled

Those that suppress sympathetic nervous system activity

- inderal/propanalol and other beta blockers

- methyldopa

- clonidine etc

Im sure ive missed a few just off the top of my head

Those that work by unknown means:

- Lostartan

my main comment would be that how do you know you dont pool in the stomach much? The largest veinous capitance beds are in the stomach and pelvis.

Some POTS dont actually have pooling by the way - well at least there is a thought that increased microvascular filtration moves plasma out of the veins and into surrounding tissue.

Ive heard octreotide can be helpful for some.

Vandy just published a study that suggested acute dosage of SSRI did not improve POTS if that is of interest.

Mestinon can be helpful but works mildly and only helps dizziness not fatigue in my case.

Dont be fooled by random comments made by unknown people on wikipedia or random comments in some studies.

The outcome of POTS in various patient groups and subdivisions based on primary etiology are completely unknown and unmeasured. There are no proper longtitudal studies. Remission is completely possible and Ive been told that spontaneous remission is definately possible.

Over the years (ive had relapsing pots since 2003) ive noted that the patients that get POTS out of the blue and have one long bout that lasts two to five years seems to recover the best. the others are either sick all the time and variable or like me and relapse/remit with periods of almost complete wellness in between.

Worth a shot. problem is that small fibers, microvascular filtration and venous pooling occurs mostly in areas in the middle of the body rather than the cutaneous (skin) micro circulation.

I have small fiber neuropathy POTS and licorice was my main stay for years. Now it doesnt work as well but i have other mainstays.

Licorice is great.

As well as its often reported blood volume increasing properties via sodium retention in the kidneys, it also acts as to increase cns dopamine, acts as a mild MAOI, can reduce nitric oxide in the endothelium (wish i could find that study again) and contains steroid-like compounds that can suppress autoimmunity.

Licorice is fantastic by the way. It contains natural steroid like compounds that can suppress autoimmunity, acts to increase dopamine in the brain which can help energy (is a mild central stimulant), reduces nitric oxide in the endothelium increasing vasoconstriction and ofcourse its main function is to trick the kidney into increasing sodium in the blood.

This is the nature of autoimmune and autoinflammatory illnesses. Very few other types of illnesses wax and wane with spontaneous flares and remissions. If you read patient descriptions of conditions like MS and Ankylosing Spondylitis you will note that their flares ups and remissions are identical.

Id encourage anyone with random fluctuations in symptoms to see how they feel during the build up to a storm.

Id also encourage anyone with this presentation to get a QSART or skin biospy as this presentation often occurs with neuropathic POTS (specifically the autoimmune small fiber autonomic neuropathy)

Im sceptical but good luck.

Hi

I developed relapsing remitting Ankylosing spondylitis and POTS at the same time. In my case the pots side of things appears to be caused by small fiber autonomic neuropathy.

There is a thought that most cases of secondary POTS with other systemic autoimmune disease may be small fiber related. Small fiber neuropathy and POTS in sarcoidosis completely resolved after a patient was put on humira, suggesting it may be cytokine inflammation of the small fibers.

I was supposed to start simponi a while back but every time i go to start it my AS goes into complete remission for months on end.

PM me if you want more details.