andybonse

Hi guys,

Started florinef 3 weeks ago and just got on .1mg was feeling amazing compared to before,

Past few says ive been bad, not because of florinef and i know as ive had this before the drug.

I feel like my brain is over vasoconstricted and reduced blood flow, i feel dizzyish and not here properly in most positions, it feels like my brain is tight, its hard to explain but just vasoconstricted like a migraine, i get a mograine type headache at tue end of the day.

Vitals are always perfect too 120/66 etc the hr is slowera when upright than usual during these days too.

Its like ita not position changes that effect it, its more of just a brain blood flow dysfunction?

Anyone else get these? If it makes sense

I get this, most likely because when we get scared our bodies release adrenalin which constricts vessels and increases bp which in turn can slow heart rate, probably more than usual in us potsies.

What was the actual rate?

Barb10, I am exactly like you mild EDS, the warm swelling in hands at night in bed etc.

New research has shown antibodies causing POTS in all patients tested, they are doing more advanced studies soon. If this is the case in EDS also, then POTS wont be for life, hoping for this to be true we could be in luck.

I see Prof Mathias, recently just started on florinef and have already had improvement on 0.050mg, going up to .2mg.

What bradycardia do you get Barb10?

Tuesday, im like you always peeing 10 mins after a drink etc. I just started florinef slowly but wow I feel better!

Hey guys,

Thought would just update you!

I started Florinef a week ago 0.025mg and just had my potassium taken today and if its normal, moving up to 0.050mg, and going up a quarter of a pill each week to .1mg-.2mg.

So far, I actually feel a lot better in my head, I feel like i'm 'here', even when stood up. It's quite exciting because to feel like this is just a huge relief, also I was experiencing shortness of breath most days, it seems to of reduced significantly.

So hopefully a .1mg dose could get me back on my feet! Well, I have all fingers and toes crossed.

Side effects, none so far, against all crossed .

Welcome,

The diziness is usually on and off, speak with your doctor about dosaged with midodrine and the possibility of discussing fludrocortisone also if the diziness stays a problem,

Yes im on private he has retired from nhs. Shame we need more autonomic neurologists!

Galatea please keep us updated im from the uk. Was this mathias or ingles?

Hi,

Had some bloods done as im due to start florinef:

Potassium 3.4 (3.5-5.0)

Sodium 141 (135-145)

Magnesium 0.80 (0.75-1.05)

I am confused, my aldosterone was low and angiotensin ii was low, yet my sodium is normal and potassium is low?

I know its hard to explain mine was like

Flipflop....flipflop.....etc not completely together,

I suppose v tach feels like a constant flipflopflipflopflipflop?

Thanks,

When you say in a row, usually I get single pvc or one after a few other beats. Like a flip flop and feeling in my throat quickly. It felt like that but kept doing it every few secs.

So when you say in a row how fast do they happen? Since a single pvc feels slowosh I guess!

It probably wasnt v tach but its scary.

Ive had cardiac mri, ecgs, echos, stress ecg, 24h ecg so nothing wrong can be found.

I suffer from odd pvcs so maybe just a few of them,l

Krissy 21 what does v tach feel like to you

Hi all

3 days ago I was sat and felt like a skipped beat and a feeling in my throat, then it did it again and kept doing it for 30 secs. It really terrified me so called 999 ended up I hosp but all was fine at that point.

When it was happening I got on the floor and adrenalin kicked in and everything was normal but scary.

Anyone had this?

I am terrified of having ventricular tachycardia or something now!

Hi,

As per the title of this thread,

Have you had:

Renin / Angiotensin / Aldosterone tests?

Have you had a blood volume test?

Are you classed as normal red blood cells or high / low?

--

Do you drink normal and urinate a normal amount?

Has anyone had their cholesterol increase or red blood cell count decrease while on florinef? Both of these have always been normal for me, but after around six weeks on florinef (.1mg a day), my cholesterol came back high (I am underweight, and have close to zero cholesterol in my diet), and my red blood cell count came back low. My potassium/sodium/etc. were still normal.

Because you possibly had low blood volume before florinef, the red blood cell count looked normal, but now its nearer a normal; level infact you are truly anaemic.

The above is a potential possibility to talk to your doc about!

Thanks,

The research I've thus seen states, high angiotensin ii but low aldosterone. Not the same in my case, strange.

Some doctors have said that I've spoke to online, that angiotensin ii is hard to measure so it may not below, however I pee a lot, which is a symptom of angiotensin ii, and low aldosterone so yeah I think the labs are correct.

I will repeat them soon but its like $900 a time haha.

Did you have these done via Labcorp or Quest? I know all of my values except angiotensin II.

My aldosterone continually comes in around 83 pmol/l (upright)! This seems way lower than the average of the POTS patients in the study. At the same time, my renin always comes back in mid-normal range. My vasopressin always comes in low also. It is confusing.

I have a prescription to start Florinef, but I've been sick with either a bad cold or a feverless flu for most of January. I didn't want to start any new meds until I felt back to my "normal".

Please keep us updated. I'd love for us to all hash this topic out to see if we can find out more on root causes.

I'm in the UK so I did them through a private hospital.

Wow, thats low low! lol. Florinef will increase the alodsterone though so thats good news. Angiotensin ii stimulates release of vasopressin, so you may have it low.

I pee a lot so can only assume my vasopressin is low too, but who knows.

Start my Florinef next week now, going to have my electrolytes tested before I start, starting low and working my way up.

Thanks guys,

I hope to one day be a doctor and look into things fully.

I've seen the articles on antiotensin and POTS before. The question is - why is yours low. This analysis doesn't answer that. It could be a feedback loop. With that said, I hope fludrocortisone works for you. Good luck, and keep us posted.

Thanks,

Yes there is no explanation to why its low, but fathoming this out would be challenging and probably involve lots of tests to find something if at all anything.

Could be the tiniest SF Nerve damaged or a receptor issue.

One day maybe we can find out!

Since the renin is there in a normal amount, its something to do with a receptor issue maybe? Maybe my lungs dont have ACE? haha, well I might look deeper when well enough, maybe some angiotensien tests.

Hi All,

After vast research, I have personally determined my POTS is caused via my kidneys, whether it be nerve damage or receptor damage/inability.

I recently took some blood tests of hormones which I arranged myself without a doctor:

Cortisol

Aldosterone

Angiotensin ii

Renin

ACTH

Cortisol was perfectly healthy range for the AM.

ACTH, Perfect.

So this suggests my adrenal glands are working and the pituitary gland is working fine also.

Next, my Angiotensin ii(responsible for causing vasoconstriction and aldosterone secretion, plus signalling vasopressin secretion) was abnormally low, normal ranges 20-40, mine were 8. This is the big issue.

Next, Renin, this was a normal value, which means my Angiotensin ii should be higher, unless there is some issue with the release of Angiotensin i or the conversion of angiotensin i into ii via ACE receptor problems/release.

Next, because my Angiotensin ii is low, my Aldosterone was low also.

The above explains, why I urinate so much of what I drink, and also why my diastolic BP is a low number, less vasoconstriction and low blood volume.

We all know dehydration causes POTS, so the above clearly is either the main issue or a huge contributor.

Plan of action:

Fludrocortisone(will increase my aldosterone, retain salt and water increasing the blood volume to a more normal level)

Midodrine(Once started on Fludrocortisone, to compensate for the lack of vasoconstriction)

Now, I tried Midodrine first, and it helped a little, when I took a higher dose it made me worse, now heres why,

Because vasoconstriction is controlled by angiotensin ii, the midodrine replaces that action which restores a normal peripheral resistance throughout the body, however because the blood volume is not been increased, vasoconstriction will not work anymore with a higher dose, it will actually decrease the blood flow too much because there is not enough blood to go around, so this causes less perfusion in the brain and organs.

Boom, let me know what you think.

Also, there is a study done by SR RAJ, which backs up exactly what I said above so I know im not going insane, just frustrated my doctor never even thought to test for this.

Study: http://www.daxor.com/pdfs/raj_renin-aldosterone_circulation_2005.pdf

In the study, the participants aldosterones were 190 supine, mine were 160 upright, which means my supine levels would be even lower!!

Andy

Hr laying is like 50-64. Sitting up varies depending on how high chair is 58-70 and standing 90-110.

Im worried after reading about aortic insufficiency matches this lol, I had echos though

Thanks, yeah MAP is normal and PP. But im not exercising its just at rest.

Makes me wonder if peripheral resistance isnt enough?

Thank you,

What was your before and after BP, My HR goes from 60's to like 100 and feel light headed and short of breath, weak, fatigued most the time.

Hoping this is an answer for me.

Has it changed your life?

With the Potassium, my levels are normal had them tested a few weeks back and a few month back before that.

Will a normal potassium supplement of 99mg 4 times a day and high potassium food diet be enough or would you recommend the slow K-dur stuff from GP?

Im surprised my doctor didnt mention this either.

Hi,

My BP is usually like:

110-120/58-66

130/61

110/50

What does this mean, could it be low blood volume? Could the systolic be compensating for the lower diastolic when it jumps it from movement?

Trying to rise it, starting florinef tomorrow.

Hi,

My Pulse Pressure is usually 46-72, i.e 124/60.

So clearly the pressure isn't there when the heart is at rest, pointing to vasoconstriction issues or a less blood in main circulation?

Anyone have a wide pulse pressure before Florinef and it solve this issue?