ramakentesh

Its funny. Before i was on florinef i could not tolerate midodrine. Now i am i tolerate it fine.

phenylephrene/ neo synephrine works i a similar way to midodrine.

Northera does not cause supine hypertension and is now also being trialldd in pots. Its a norepinephrine prodrug.

Clonidine is best tolerated. Losartan is being tested

Hi anyone with abnormal QSART results get extreme all body itching?

Oh I see. The nerves and receptors implicated in some pots are also Intimately involved in intestinal processes

Yes hypoperfusion can cause depression and anxiety as can reduced cerebral sodium reception and co2 changes in pots.

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I was assume that depression would not normally follow a similar pattern to pots symptoms and resolve in the evening each day.

Consider that pots and all oi conditions involve neurotransmitter(s) that are also involved in central mood and cognitive regulation.

Consider also that if a pots patient had reduced ne reception the symptoms would be similar to low norepinephrine rather than high. medications that deplete norepinephrine in pre synaptic vesicles cause severe depression.

Can you tolerate caffeine? As a one off it would be hypothetically interesting to see how your mood responded to a mild stimulant. My guess is it may help.

I have this problem that waking like I'm dead feeling

I personally think its good stuff for POTS. Why it works is very confusing but for me its the best POTS med ive been prescribed.

Its a good question. Studies suggest people with POTs can have successful pregnancies with it without significant worsening of symptoms, but if yours arrived postpart. then it might be worth treading with caution.

Once you realise that POTs and OI comprises of probably 40+ different disease processes you realise that works for some may not for others.

I dont see the signs of parasympathetic activation? Mestinon which boosts both sympathetic and parasympathetic activity does not cause a worsening in symptoms.

In many sympathetic activity is an ineffectual response to sudden fluctuations in circulatory return to the heart and brain.

sorry just read through the whole thread. I wonder if the depression is actually related to the POTS. As in being caused by it. Its a tough one man.

sorry to hear about this.

SNRIs are controversial but one of the most hyper patients on these forums reported success with SNRIs when it would be presumed the opposite would be the case.

MAOIs seem better for depression in CFS i remember reading.

This is quite common - in fact for me medications I have tried int he past and didnt work have later for some reason. Or vice versa.

Talk to your doctor as now days there are many options available according to peer reviewed papers:

Other vasoconstrictors include Phenylephrene, dihydroergotamine, synephrene, pseudoephedrene have all been prescribed for OI and POTS.

Some docs prescribe Modafinil, Ritalin and other stimulants for vasoconstriction and central stimulant effects.

Mestinon is another option. There are papers on its efficacy in POTS.

Losartan has been reported to be beneficial in select patients.

Licorice kept me employed for six years LOL

It is weird however because most POTSies who take a beta blocker to block sympathetic excess can feel more dizzy - whereas alcohol doesnt do that

Ive always reported this although it doesnt always work - sometimes a beer can actually bring on POTS if it is already looking for an excuse to play up.

Ive had many theories over the years - just cold volume loading constricting stomach veins while mildly suppressing sympathetic symptoms?

immuno suppression? ( i met a lady with RA who sadly used alcohol to keep her pain under control )

The other interesting thing is that alcohol causes an excessive post alcohol sympathetic rebound response which means you may feel better the next day at well if your sympathetically mediated vasoconstriction is already messed up.

Also alcohol reduces clotting factors and there was a recent study that associated POTS with autoimmune clotting disorders like APS.

When they work out the cause(s) one day they may explain why this happens for some but not all.

My POTS fluctuates totally independent of volume status or all sorts of other variables. it is just a fluctuating illness at least for me and my volume status may help me cope with the symptoms but the underlying problem is not down purely to volume status or we would all be 100% cured by florinef.

Very common to have either inflammatory autoimmune conditions or autoimmune conditions with POTS.

I have Ankylosing Spondylitis and POTS that cycle between each other. Thankfully my POTS is episodic although my general fatigue levels arent.

Current theories are as you say - autoimmune or cytokine mediated lesions on small fibers causing impaired small vessel venous return or more recently autoantibodies blocking/binding to alpha 1 adrenoreceptors impairing venous return or causing a sympathetic response to compensate.

the confusing this is that in both scenarios the sympathetic response can compensate for the blood flow abnormalities creating a mild hyperadrenergic state, or fail and leave you dizzy and very fatigued.

Hashimotos is common, chrohns, RA, Sjogrens.

There is a study right now evaluating whether POTSies with EDS have the same alpha 1 autoantibody levels as POTS post viral onset or POTS with comorbid autoimmune disease.

POTS in a setting of comorbid autoimmune disease is now presumed to have a similar etiology. It may wax and wane in some.

Excellent thanks. I tried it for the first time yesterday and today at 100mgs and it was interesting. Definately increased my energy, my standing time and I did not a higher tachycardia but I felt relaxed. lasted a long time too - from about 1pm to 7pm which is amazing. Today much less response.

As a side effect I found myself having to stop from getting aggressive with people that were talking to me. It was like I was so focused that people talking to me annoyed me because I just wanted to think about what my mind wanted. I dont know it was kinda weird.

Other thing was I woke like Id been run over by a truck today. Really thirsty, out of it and kinda dopey.

It must have dopamine action because everything I look at looks so amazing or something. Weird. Also food tasted much better than normal.

I drank coffee with it and that pushed me over the edge I think.

I've heard conflicting information on caffeine. I don't mean to suggest that you go against your doc's orders, but you may want to look into it more. My cardiologist told me to stay away from caffeine but I have found that while too much caffeine does make me fee bad, a little caffeine makes me feel better. I believe it is because it is a vasodilator. The extreme fatigue I get is pretty crazy. It washes over me suddenly and I feel like a rag doll, can hardly keep my head up. I drink a cup or two of tea and it helps. Getting cold helps a little too. I don't like to be cold, but when I am really wiped out I will lie down in front of the fan or take a cold shower and it gets my blood flowing better.

caffeine is a vasoconstrictor not a dilator

Prognosis data is interesting and somewhat alarming but largely mirrors the info on this site.

I range from 100% well to quite disabled at times. I had a period of complete remission for 3 years at one stage.

Volume status via volume loading, salt, florinef or licorice

Adrenergic vasoconstriction via vasoconstrictors - midodrine, phenylephrene, pseudoephedrine, synephrine, caffeine, dihydroergotamine, etc

Anyone else find their med sensitivity went away after long term florinef - I bet There are a few.

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