ramakentesh

True but at least it didn't make it worse. Thanks for your info.

Dihydroergotamine - a selective veinous vasoconstrictor.

Its autoimmune or steroids increase your blood pressure.

There was even a company trying to capitalize on the study to sell their product and two of the researchers had to contact them. By reducing sympathetic vasoconstriction vitamin c in large doses did not improve symptoms, merely local vessel blood flow.

This study has often caused confusion. Intravenous vitamin c improved the regional local blood flow by vasodilatong but in all patients tested it actually made standing tolerance far worse. Please email Dr Stewart to confirm. this is the danger of applying selective medical research to patient interpretation.

If blood volume was the only problem then florinef would cure pots.

You beat me! Blocking autoantibodies against alpha 1 vasoconstrictor receptors causing elevated norepinephrine release in the face of orthostatic vasoconstriction failure but the increased NE is felt by other receptors fully causing tachycardia and other symptomatic effects of sympathetic excess. Beta 1 receptor activating autoantibodies also implicated. replication studies on way!

they think increased sensitivity of the sinus node to beta receptor stimulation from beta 1 receptor supersensitivity. there are several theories as to why, none proven.

I used to be kind of like this until I was able to increase my blood volume with florinef. From then all meds work as they should without any major problems. it appears low blood volume can interfere with vasoconstrictors and other meds.

what davecome said!

The most interesting thing about people with low blood volume in POTS is that treating it rarely totally corrects the underlying problem, suggesting it is an epiphenonema rather than a primary cause in most.

great and informative post. thanks.

Hi Macca, I think i know who your doctor is - I live in the same city. Ive taken DHE for many years for POTS. its helpful and pretty well tolerated. My only problem with it is that the first dose works great for about 40 minutes and the second dose almost does nothing. I upgraded to other meds in the end. As a fellow aussie feel free to PM me to discuss in more detail. cheers.

Happens to me as well. I believe it because the POTS body overcompensates for variations in blood pressure, constricting overly in response to hypotension. You may find that meds like midodrine will make you feel better AND LOWER your standing BP. This is what happens to me.

Midodrine can actually sensitize alpha 1 receptors over time and allow for norepinephrine stores to be increased in sympathetic presynaptic vessicles, both of which would or should result in overall improvement to orthostatic intolerance syndromes. I know of patients who after taking midodrine for a long period, wheened off and were normal. So they did not become dependent and in fact improved behind the scenes while on it. For me personally midodrine and phenylephrene dont really help that much with fatigue alwasy but definately with dizziness. The only med that has touched my fatigue is pseudoephedrine but Im not a hugely tachy POTS patient so I can tolerate it ok.

Recent evidence suggested that those with EDS often have abnormal QSART suggesting a possible neuropathic basis for their pots along with increased venous elasticity which has never been demonstrated.

I think they will solve the primary etiology of POTs eventually.

that article is discussing a few well known and potential norepinephrine transporter inhibitors. Only one or two of them are dietary and I doubt they are anywhere near as potent as the chemical ones listed at the start of the article. Not seeing the histamine connection at all - histamine's effects are mainly microcirculatory whereas norepinephrine transporters occur on large sympathetic synapses, in some immune cells and in the brain stem. Norepinephrine's effects in the brain are the opposite to peripherally. In the brain it acts as an alpha 2 receptor agonist suppressing sympathetic outflow so cerebral gaba would work in synergy with norepinephrine rather than suppress it. gaba is mainly a central neurotransmitter whereas norepinephrine is used in the entire central and peripheral sympathetic nervous system.

I think your kind of making assumptions about what your veins and arteries are doing for a start. Most vasoconstrictors work on alpha 1 receptors (midodrine, phenylephrene) and serotonin receptors (DHE) which are expressed more in the microcirculation than anywhere else or in the case of serotonin receptors specific for the veins. Blood pressure readings are almost meaningless in POTS since they tell you very little about regional blood pooling, increased microcirculatory filtration, brain perfusion and most importantly stroke volume. When i take vasoconstrictors my standing blood pressure lowers and I feel better.

Curing lightheadedness is the million dollar question! Sometimes medications like midodrine or phenylephrene can help. Licorice can sometimes. Caffeine can sometimes for short period.

POTS itself causes vasoconstriction of the eyes or so I was told so slightly increased Intraocular Pressure - mestinon can helps POTS and improve this symptom potentially. Worth considering. I also get this symptom but I have ank spond which causes weird eye inflammation.

There is a new autoimmune mechanism in the process of being published. POTS seems to occur occasionally in those with Sjorgens, Hashimotos, Crohns and inflammatory arthritis (Rheumatoid, psoriosis arthritis (sorry about spelling) and Ankylosing Spondylitis). Out of interest does your POTs wax and wane or flare and remit? Secondly have you been on TNF inhibitors for Crohns?

Hope you get some relief.

It is very unpredictable. I was told of a patient that had it constantly for 12 years then just one day woke up almost in remission. My cousin experienced what may have been pots at 15 and recovered - mine came on at 26 and has waxed and waned since then

All great tips. My only comment re exercise is that absolutely going out and gaining yourself even in a setting of improved general fitness via a headed exercise regime (which is key) can cause me to crash. once in a crash I have to start exercise from scratch for some reason. its always great to hear positive ideas and they seem to mirror my own coping mechanisms