bombsh3ll

As well as retaining salt and water, florinef also potentiates the effect of noradrenaline in the body. For some people this can be beneficial as it constricts their blood vessels, but when I have tried it these effects have been a problem for me too. I end up even more vasoconstricted, non-psychogenically anxious and jittery than usual and my HR does not go down. My BP goes up, but my BP is normal to start off with so I don't necessarily want that. All I want is more blood flow to my brain to not be presyncopal all the time. I also got terrible palpitations on it too, which is a symptom of low potassium. You need to make sure you are having regular blood tests for electrolytes at least in the first few weeks on it. When it was prescribed for me I wasn't offered any follow up or blood tests, which is frankly dangerous. 

I may reconsider it again after I am able to get a blood volume test.

I think what has skewed this test is your high baseline HR which was 109 supine. I suspect this is not reflective of your normal, and if you had been left to lie quietly for at least 10 minutes as per the guidelines, you would have started off lower, hence a jump of 30+ would have been more likely. 

Even if your results are just borderline, you clearly have very symptomatic and disabling orthostatic intolerance which is deserving of treatment. I would argue strongly for a trial of flucrocortisone and/or midodrine.

I was recently offered ivabradine but decided against it because I personally feel in my case the tachycardia is a compensatory physiological response to low blood volume, and that suppressing it would not be helpful. I felt worse on beta blockers for the same reason.  What dose of fludrocortisone are you on? 

I'm sorry you're dealing with this too.  I've also found this site very helpful. Have you had any treatment like fludrocortisone or midodrine, or an echo to exclude any structural/valve abnormalities the procedure may have caused to your heart?

I have POTS which I had pretty much diagnosed myself after 3 days (even though the diagnostic criteria say symptoms for at least 6 months) but fought for 3 years to get a formal diagnosis. 

I am in the UK, so care on the NHS is non-existent unless you have a common, well understood condition, or even better, one that is self inflicted.

My onset was also instant in 2014, after I tried to blow up a water bomb which I thought was a balloon, I passed out and have been presyncopal and tachycardic with all the other POTSy symptoms ever since. I wonder if I too caused some kind of autonomic nerve damage in the heart/chest area. 

Never give up fighting for medical help to investigate your condition and improve your quality of life. 

Well done for surviving your TTT! 

I think it's great that you got a cerebral doppler at the same time - whatever your BP and heart rate did during the test, the doppler can help you demonstrate objectively if you have low cerebral blood flow when upright. I can be sitting with a completely normal BP and heart rate and still be very lightheaded.

It sounds as if you are getting very thorough testing though and if you do have an autoimmune disease it does of course open up other avenues for treatment.

I would really love a couple of bags of fluid!!

Have you ever had a blood volume test? That is what I am currently trying to arrange so I can PROVE how volume deplete I am!

It is interesting that the Northera helped you feel better,  I feel like more noradrenaline would be my worst nightmare - did it not make your heart race even faster?

2 hours ago, KiminOrlando said:

I couldn't do this either. My doc told me that I still needed to stand for the test for as long as I could, then when I felt like I didn't have much time before I passed out, they drew the blood. All the hormones get stirred up and he needed to know my specific make up just prior to fainting. One time I fainted before he got blood, so he stopped the test. He said this test is VERY sensitive and norepinephrine would give false readings very easily. I don't know if adrenals are the same way or what standing test you were doing, but wanted to pass that along.

Did you have the cannula placed in your arm ready before you stood up? How was your norepinephrine level, was it helpful to know the result?

I've never had plasma norepinephrine tested - just urine over 24 hours to exclude pheochromocytoma. I suspect I have high adrenergic output (probably to try and compensate for low blood volume) due to my symptoms when upright - tachycardia, clammy hands, sense of non-psychogenic anxiety/panic/impending doom/ heart pounding, shaking etc. 

It took the nurse several tries to get into my veins lying down as they are so tiny and thin - I had veins like drainpipes prior to becoming unwell, another sign to me of hypovolaemia - that they would never have managed it with me standing!

I tried a small dose of 1.5mg LDN, once and once only! I planned to increase gradually to about 4.5mg as tolerated. I am an opioid responder (pain and hyperadrenergic symptoms wise) and was hoping to boost my endogenous opioids.  My reaction to it was similar to someone withdrawing severely from heroin - sweating, extreme tachycardia, high BP, shaking, anxiety, agitation and general malaise. I did't sleep at all that night. I guess I must be producing some of my own opioids after all for that to happen!

1 hour ago, haugr said:

None of the doctors that I visited directly tested me for angiotensin ii, and I'm not sure if there is a common test available. My doctor said it was more of a "lets try this treatment to see how you respond" type of a thing.  In my opinion though, if you are abnormally frequently urinating, and diabetes has already been ruled out, then I would say thats a pretty good indicator.  In fact, the frequent urination was really my first symptom.  My wife used to tease me mercilessly about my tiny bladder

That's really helpful info, thanks. Did you ever have a blood volume test which confirmed hypovolaemia, or if not, did you or your doctors suspect you were hypovolaemic? As your aldosterone was normal I guess you didn't need to take fludrocortisone, but if I try losartan I'd take the two together it in the hope I can get some volume repletion whilst at the same time reducing the vasoconstriction, as I think expanding my blood vessels without expanding my volume would be a disaster! 

1 hour ago, Clb75 said:

Have you tried an endocrinologist? They can test the Renin, aldosterone, angiotensin system. 

Yes I have, they tested the renin and aldosterone but not angiotensin ii. He had heard of POTS but was not very knowledgeable about it.

I was supposed to stand for 15 minutes before the blood tests, but if I could do that I would be running around jumping for joy, not in hospital having tests! They had to just do it with me sitting. 

When I was tested for pheochromocytoma with a urine collection, the amount of urine I passed in 24hrs was over 6 litres, so I had a hypertonic saline test for diabetes insipidus (it was awful, really dehydrating!). That came back inconclusive so I have to repeat it, but I have already tried desmopressin to try and increase my plasma volume and although it stopped me from having to pee during the night, it didn't help me stand any. The endocrinologist explained to me that desmopressin does help you hold water but most of it goes into the cells rather than staying in the bloodstream. 

I have now found a place in the UK which does blood volume testing, so I have put the repeat diabetes insipidus test on hold for now while I get this done. 

On 12/2/2017 at 4:10 AM, haugr said:

My experience was that a combination of high angiotensin ii, low blood volume, and even a minor amount of activity or anxiety led led to some vicious norepinephrine attacks.  My BP would surge to as high as 180/125 when they would hit.  If i were a betting man, I would guess that you are experiencing something similar.  I would guess that the variance in POTS symptoms depends on how much fluids and sodium you have recently consumed, activity, and anxiety (which of course can vary throughout the day).  

Is there a direct test available for angiotensin ii? I know there are some studies (Lowe i think?) showing low renin and aldosterone but high angiotensin ii in low flow POTS. I produce next to no renin or aldosterone and fit the clinical picture of low flow POTS, but cannot seem to find a test for angiotensin ii either NHS or private in the UK.

I have tried fludrocortisone, which has two actions 1) salt and water retention (what I desperately want) and 2) enhancement of noradrenaline's vasoconstricting effects on blood vessels (the opposite of what I want). I am already intensely vasoconstricted with symptoms of high noradrenaline. (pheo has been excluded). Unfortunately for me the vasoconstricting effect of fludrocortisone seemed to outweigh any salt & fluid retention. I was even more peripherally shut down, hypertensive and non-psychogenically anxious, and still presyncopal all the time. 

I am therefore considering pairing it with an angiotensin receptor blocker such as losartan to negate the vasoconstricting effects, as I have heard of someone else doing, but would like to know if I actually do have high angiotensin ii levels first.

On 12/5/2017 at 6:21 PM, ANCY said:

About 2 Years ago I was in ICU because my blood pressure just wouldn't come up. (They had me upside down and my bp still wouldn't go any higher than 70/40.) They had me on dopamine and neosynephrine without good enough results so The ICU Dr put me on albumin and within a couple hours I was stable and moved to the cardiac floor. He wasn't sure it would work but it sure did! The first thing they did in the ER was fluids, have me 3.5 liters with no change.

Wow, Albumin really worked a treat for you! I would love to try it even intermittently as most of a bag of saline escapes from the vasculature very quickly (not that I am anywhere close to getting any form of IV fluids though the medial system at this point)!

Have you ever been able to obtain it on a more regular basis since, given it helped so much?

On 11/26/2017 at 12:19 PM, m@t said:

Hey Bombsh3ll have you looked at seeing Prof Mathias in his private clinic? 

How did your symptoms start?

Hi m@t,

I made enquiries with Prof Matthias' private clinic but apparently he doesn't use IV fluids as treatment at all, which is what I am really keen to pursue. He also seems to favour a lot of expensive testing which in my case would be largely duplication or not add anything to my quality of life. I am a GP so have been fortunate enough to be able to access all appropriate oral medications myself, which either haven't worked or I haven't tolerated them. 

The only remaining test I want to have, which until recently I didn't know was available in the UK, is a blood volume test, to prove how volume deplete I believe I am. I am currently working on getting a referral from either my GP or private cardiologist for this, which is like pulling teeth!

I am being assessed for diabetes insipidus, Sjogren's and EDS through the NHS. Tests show I produce next to no renin or aldosterone, but unfortunately fludro doesn't hydrate me - it's vasoconstricting action seems to outweigh salt retention in me. 

Symptom onset for me was very abrupt, 5pm on 4th August 2014. I tried to blow up what I thought was a balloon, turned out it was a waterbomb, ie a forceful and prolonged Valsalva. I passed out, and have been on the verge of passing out ever since, unable to stand for more than a couple of minutes with a standing HR on test of 136. I was completely healthy to my knowledge before that time. I don't know if that "caused" POTS for me or just tipped me into being symptomatic. 14 months prior to that I had a massive postpartum haemorrhage at my daughter's birth, and I do wonder if the two are connected. Prof Newton also suggested that my blood volume may never have fully recovered from that and then been triggered by the balloon incident. Maybe I would have developed it anyway, but I wish so much I could go back to that day and not try to blow up that balloon!

How about you, have you seen Prof Matthias and what was your experience if so? Also was your onset sudden like mine or gradual

Hi I know this is an old thread but currently relevant to me and I'd like to revive it and hear about anybody's more recent experiences with albumin or other colloids instead of or compared to saline!

Another shaker and twitcher here!

I would suggest getting your electrolytes checked, particularly if you are drinking a lot of fluids or supplementing salt, potassium, Mg, calcium etc or taking drugs like fludrocortisone or licorice root.

It's scary when it happens x

Hi, I am really desperate to try regular IV fluids for my POTS which is severe and refractory to all the standard medications. I have heard of the occasional patient getting this but that it is very hard to convince doctors. I believe some patients at the NHS autonomic unit at UCLH are now receiving saline via PICC/PORT. 

I would love to hear from anyone in the UK who has managed to access IV fluids either NHS or private. 

That's rubbish, there is something clearly wrong when we can't stand without syncope/presyncope. Many patients with pain cannot "prove" their symptoms either yet they receive painkillers. People with wheezing and shortness of breath who test negative for asthma on spirometry are diagnosed clinically and treated symptomatically with inhalers. 

I haven't been able to access any NHS treatment so far either, but being a GP myself I've been able to source all the first line things myself and unfortunately none have worked. 

Licorice root capsules helped massively for a while though, and can be bought online without a prescription. 

Do keep fighting for treatment. You may have more luck with a neurology or autonomic/syncope clinic. 

Any treatment, like fludrocortisone, midodrine etc?

From what I know, pelvic floor exercises are to tighten your vagina, they are not for POTS! This would be funny if it were not so sad and so typical of the NHS. 

I was dismissed after a tilt test as well as it showed sinus rhythm and no postural drop, but they had ignored the HR rise characteristic of POTS. 

I was later diagnosed by Professor Newton in Newcastle with a stand test. 

Irrespective of your test results, having severe orthostatic intolerance warrants treatment. Have you been able to try any yet?

Hi Jojo, 

I'm sorry I can't advise on any treatment as I am not as far along diagnostically but just wanted to reach out and say you sound very similar to me, I am in the UK also and in the process of trying to get a lip biopsy as I suspect Sjogren's as a possible cause for my POTS. 

I have always had dry eyes and mouth as far as I can remember, but that is a nuisance, not disabling like the POTS which was very sudden in onset. My blood tests are also all negative for the Sjogrens autoantibodies, but reasearch shows that younger women with predominent autonomic symptoms are more likely to be seronegative, at least for many years then some turn positive. The only definitive test is the lip biopsy. 

I have an appointment with an NHS rheumatologist on Monday and am currently collecting supporting research in the hope I can get a lip biopsy on the NHS. I also have some features of EDS and so does my dad, so I hope they can explore that avenue too. 

If I can't get a lip biopsy on the NHS I will pay for one privately to rule it in or out. Do you mind sharing how much you paid for this and where? Have you read POTSGrrrl's blog, she had seronegative Sjogrens too & was fortunate to get IVIG being in the US. I would also love to know if anyone in the UK is getting IVIG for autonomic neuropathy with Sjogrens. 

How old are you, and were your autonomic symptoms sudden or did they come on gradually?

I would be really interested to hear how you get on treatment wise and if you manage to access IVIG!

I was eventually diagnosed with POTS by Professor Julia Newton in Newcastle, by a stand test, not a tilt table. This is really simple to do and took under 15 minutes. Ask your cardiologist to do this if they can't or won't arrange a TTT. 

I would however always be clear with your doctors what you want to get from an appointment and explain why. We are not mind readers and this makes things easier for us too as what we assume a patient wants isn't necessarily accurate. Of course, sometimes what a patient wants is inappropriate, unsafe or outwith NHS resources but at least then we can have that discussion. 

Remember not all medical professionals will be familiar with POTS, even cardiologists, but if you make a good case, and even better present some well sourced written material such as the POTS for medics handout from POTS UK website, they will have a harder time fobbing you off or heading down the wrong track. 

Symptoms of POTS can sound vague and attributable to many different illnesses including anxiety. If you go in and list a bunch of seemingly disparate symptoms eg if you have headaches, GI or sweating problems as well for example, hoping they will think dysautonomia, there is less chance they will, and more chance of being dismissed or ending up with an erroneous psychological diagnosis. Prof Newton said to me that as POTS mainly affects women of menstruating age, due to unconscious gender bias more patients go undiagnosed and are labelled neurotic, hypochondriac, psychosomatizers etc. than in illnesses that affect more men. 

If you're not keen on/cannot obtain benzodiazepines, have you tried a beta blocker? I don't tolerate them as they reduce cardiac output and cerebral blood flow even more, but some with POTS find them very helpful.

My GP was and is equally unhelpful. Are you in the UK? I am actually a GP myself and only found out POTS existed the hard way when I developed it 3 and a half years ago. I don't think many GPs would know what it is, but there is no excuse for being unwilling to learn about it. If I had a patient with a disorder that I had not heard of, I would take the trouble to read up on it.  

I found NHS cardiologists in my area equally ignorant and arrogant. Initially my referral for a tilt test was denied - which I only found out about when I phoned after waiting months - because the cardiologist didn't think it was indicated. A previously healthy 34 year old woman who suddenly can't stand up and was passing out, wasn't considered worth investigating. Finally I got a tilt test after explaining to the technician on the phone that all I wanted was to have the chance to walk down the isle and get married standing up!

The cardiologists then still refused to see me as the tilt showed sinus rhythm and no postural drop. They clearly knew nothing about the diagnostic criteria of POTS. 

I have now found a private cardiologist to take on my care but it shouldn't be this way. 

I hope you get an interested and compassionate cardiologist, that is worth more than any amount of knowledge if they are willing to learn and work with you. If you are anywhere in England there is also an NHS autonomic specialist centre in London that your GP can refer you to. I am currently trying to get referred there but as I'm in Scotland the process is a lot harder due to funding. 

I take diazepam which greatly helps the physical anxiety symptoms but not the lightheadedness or headache. The anxiety is definitely physical, it stems from the body's activation of the fight or flight system due to hypovolaemia. 

It feels exactly the same as when I lost a large amount of blood through postpartum haemorrhage - tachycardia, sweating, shaky, lightheaded, intense fear, feeling like you're dying. Because that blood loss was visible, I was in ICU getting blood transfusions, saline etc. Now, although I am chronically missing probably about the same amount of my blood volume I can't get any help for love nor money. 

Licorice root capsules from Swanson gave me a tremendous improvement in my quality of life for about a year until the effect wore off.  2 x 450mg caps daily. Works similar to fludrocortisone (basically makes your own cortisol act like aldosterone). 

I produce almost no aldosterone, but do not tolerate fludrocortisone.