ramakentesh

I find that its easier to cut a flare early for some reason

Chemtrails man!!

Ive been having an ordinary period the last few. On and off for six weeks so four days is a dream!!

Im on florinef and either mido or pseudo on bad days. However on full crash days nothing touches it often

Bump in case this is of interest

Give it a go but it was a fail for me

If it improves quality of life i wouldn't judge - oi is a debillitating group of conditions

I think its main action that would be helpful in pots is nicotonic induced postganglionic amplification of both synpathetic and parasympathetic tone and transduction although for me at least my problem is sympathetic vasoconstriction and compensatory tachy

Yeah i get the weird feeling in my arms

Some patients with sfn respond to tnf alpha inhibitors

Theoretically it could definately help.

Yes i think the word 'cure' is a jump. More effective treatment that worked for most people reliably and that was not utterly expensive would be a good start

Def helps some - personal choice i guess. As for pots and tachycardia - its a compensatory response

Hyperadrenergic responses can happen in all forms of pots sometimes as a compensatory response sometimes as the actual problem

Yeah that does happen

Vanderbilt recently suggested that hyperadrenergic pots is a description of a presentation rather than a subtype.

ive spoken to a few that say prednisone got their flares under control yet others say they made POTS way worse.

I think (personally) that the rebound crash the next day or hours after exercise (what they call payback maybe) is an autoimmune/inflammatory response or just the mechanism worsening after exercise for what ever reason.

I find that at first after a crash any exercise makes me worse but I do gradually get better if I persist. the best way to avoid the payback is to keep going before it comes back. For me its either complete rest or exercise. If i exercise and then take the foot off the pedal i go backwards.

that being said I am in no way implying that exercise is a 'cure' for pots or even that effective a treatment. When i was running 5kms three times a week, swimming 1 km twice a week and doing weight training Id still require licorice to get through the working day and I relapsed just as much.

For me at least exercise just seemed to improve my ability to exercise without getting worse. It increased tolerance - just like if there is a food that makes my pots worse I can avoid it or eat it constantly until my body gets 'over' its weird reaction

it all sounds crazy but after 11 years these are my conclusions.

My pots is all over the place so often i dont take any - or i take 2.5 and on bad days i either take 5mgs or i take pseudoephedrine - my doc is fine with this regime. this is on top of florinef.

The work is being done right now. No results yet.

Hope not

Ive never had to increase the dosage but i sonetimes have breaks from it

It works ok for me. Usually pretty easy to tolerate

Classic pots. Rebound sympathetic mediated reductions in stroke volume.

best bet is to continue exercise in the hope it goes away or talk to your about midodrine

Yes and ive spoken to about twenty pots patients who also have waxing and waning ankylosing spondylitis.

There is s gene test that can detect it (hla b27).

Pain is migratory and can effect sacroiliac joints, anywhere along the spine and shoulders. Worst in mornings and after rest.

hope she doesnt have it but for me it came on with pots.

its an autoimmune disorder

My pots is also a waxing and waning type presentation.

Rest is important when acute. Hiting the salty liquids can help.

when i flare i find eating lots of healthy foods can help.

in the past licorice and now midodrine also help (talk to your doc)

Impending doom feeling is sympathetic overdrive being detected by beta receptors and the overdrive is usually an attempt to deal with reduced stroke volume and cerebral perfusion