bombsh3ll

I am really sorry you are suffering like this and do hope you get some relief soon. I am glad you have good medical care and the causes of your problems are being identified. Have you had a transfusion for the blood loss? Look after yourself.

B xxx

I think your neurologist's reasoning is ill informed and not based on scientific evidence, however if you have GI problems and found improvement after excluding these things, and are getting your nutrients in other ways, then I would stick with what suits you. 

We are all different, and whilst GI motility can certainly be affected by dysautonomia, I do not believe dysautonomia is caused by eating certain foods. I've had a lazy gut since childhood and take a daily laxative, but eat what I want. I developed POTS at 34 very suddenly and it has had no effect on my digestive system other than feeling sick when presyncopal and sick due to consuming the necessary amount of fluids. 

On 4/27/2018 at 10:21 AM, insertclevernamehere said:

How much did you need to take, and how long did it take to notice any effect?

Two 450mg capsule daily of Swanson's Licorice Root. 

Effects noticed within a few hours of taking - I was standing (with a grin all over my face) after 8 months of being chairbound. 

Definitely worth a try! I still take them now even though the effects have waned as I don't know how badly off I'd be without them. 

I'm very much like you although I don't produce renin or aldosterone, so I know the reason I am hypovolaemic. Normal cortisol here too.  Fludrocortisone also doesn't help me unfortunately - the vasoconstricting effects outweigh any volume enhancing effects for me too. I had life transforming benefits for about a year from licorice root, it enhances blood volume without the side effects of Fludorocortisone. You might want to look into it as an alternative option. It can be bought online or from a herbal store. The effects wore off after about a year as I think my body adapted to it and probably just started to produce more of the enzyme it suppresses, but that was one fantastic year. 

Yes, I love diazepam, it is very helpful for the symptoms of sympathetic excess in POTS. You are very lucky to have such a compassionate doctor who isn't afraid to prescribe a very unfairly stigmatized drug. 

Do you really think you have an anxiety disorder or could it have been misidentification of earlier POTS symptoms? 

I am not necessarily sure it would affect POTS one way or the other and a trial wouldn't do any harm, you could always take it off. The main thoracic vessels are very deep so I cannot see them being compressed any by an external binder. 

In my experience magnesium is a decent laxative but doesn't have any other benefits. 

On 4/16/2018 at 5:50 PM, Bluebonnet08 said:

How did you develop POTS suddenly if you don't mind me asking?

This sounds ridiculous but it was a very forceful valsalva that triggered my POTS. I have two children & one day my dad came in with one balloon. I knew they wouldn't share so went and got what I thought was another balloon from the drawer and tried to blow it up. I blew SO HARD as my kids were screaming and fighting, I just wanted a balloon for each of them to keep the peace. Blowing so hard I passed out. At first I wasn't too worried, it is common for people to faint after straining hard. I lay on the floor, waiting to come around properly and the lightheadedness to go.  It didn't so we called an ambulance. It never has gone away, and I haven't been able to stand for more than a couple of minutes since. It was 5pm on Monday, 4th August 2014. I remember the time on the oven clock as I lay on the floor. My life was taken away from me that day. It turned out what I thought was a balloon was actually a water bomb and I would never have been able to blow it up. I was a completely healthy 34 year old before that day. How I wish I hadn't tried to blow that thing up. I will never know if I would have developed POTS gradually or some other way had that not happened, but that's my story. 

I found POTS googling my symptoms in the few days after becoming unwell. My HR did the same thing standing. It took me 3.5 years after that to get a formal diagnosis though, and after that I saw a genetecist as I and other family members have some features of HEDS, so that was where I got that diagnosis. The musculoskeletal and previous surgical complications of HEDS are trivial for me though and I would never have sought a diagnosis of this if I didn't have POTS. I mostly pursued the EDS diagnosis in order to support my disability claim as POTS in this context doesn't go away, and although deep down I do not believe my POTS is secondary to this, it means I am recognized as having a permanent condition rather than something that might go away which is what people can be told if they have no other diagnosis, even though the evidence for it going away is scant. 

On 4/16/2018 at 12:50 AM, Pearlie said:

He did tell me that I read too  much.

No, it is your doctor that ought to read more! I wouldn't waste any more time or money on him. 

I have read papers reporting successful use of clonidine, nitroglycerine and hydralazine for this indication. I think the first two are available in patch form as well as pills. There may be other options too so I would speak to your doctor.  Also a bedtime snack can help in lowering blood pressure via postprandial hypotension. 

I had twitching all over for 14 years before I got POTS & I still do. It is called benign fasciculation syndrome. The clue is in the name, benign. It's nothing to worry about. Of course it was very distressing when it first started and for a couple of years I was convinced I had something horrible. In those days I didn't know anything as truly miserable and life-stealing as POTS existed and I wish I hadn't spent precious time worrying and not enjoying myself when I was healthy.

I think adolescents who develop it during a growth spurt do tend to get better, but can't see myself "growing out" of it given I developed it at 34. In real life from what I have read and learned I don't think it is common for adults to recover fully, although if a successful treatment combination is found I believe quality of life can be improved. I think a lot depends on underlying pathology. People whose main problem tends to be low blood pressure may find they improve with age though as blood pressure tends to rise with age.  I have a diagnosis of HEDS but I would never have been diagnosed with this if not for POTS as for me the musculoskeletal and surgical complications are mild and by no means disabling, and I don't personally believe in my case EDS is the cause as poor collagen is congenital yet I developed POTS extremely suddenly. I believe my cause is volume depletion of endocrine origin as I produce no renin, aldosterone or ADH. 

On 8/2/2014 at 9:39 PM, Newoldpotsie said:

they tell me as long as I'm urinating and it's not dark in color I'm good but does that apply with POTS?

In a word, no. The belief that clear urine = adequate hydration assumes appropriate production of fluid retaining hormones like ADH and aldosterone.  A healthy person who was dehydrated would automatically concentrate their urine, but someone in whom one or both of these hormones is deficient cannot do so effectively.

On 4/12/2018 at 5:27 AM, haugr said:

The frequent urination is probably a sign of a dysfunctional raas, which basically means that you aren't retaining fluids like you should.

I second that. I produce neither renin nor aldosterone, and tend to have high diastolics. I think the RAAS can malfunction in a number of different ways though, as losartan didn't help me although I've never had angiotensin tested.

Beta blockers suppress renin production, and they also cause vasoconstriction by unopposed alpha receptor activation, but I would not imagine these effects persist for very long after you stop taking them.

On 4/12/2018 at 2:22 PM, Pat Torok said:

I wear an Apple Watch which is very accurate compared with BP Home kit which also shows pulse. ) Since Dec, my heart rate dips to 40 to 50s  once  going as low as 31.

Having previously used a HR watch with a chest strap, I take extremes of high/low pulse from my current wrist HR monitor with a pinch of salt. Mine too will occasionally read very low - not all beats are always detectable at the wrist particularly in volume deplete individuals with low pulse pressure and/or poor cardiac output. Conversely when I use my seated indoor pedaller for exercise, I can have a HR in the 80-90s but my wrist monitor can read up to 180's!

I have low blood volume rather than low blood pressure, and I chug buckets of salt and water in the hope of increasing my blood volume however it doesn't seem to help. It doesn't increase my blood pressure though. When I feel worst, my blood pressure seems to be highest due to compensatory vasoconstriction, and when my volume is increased eg in the evening after exercising, and I feel my best, my BP is lower. I therefore don't think there is a straightforward relationship between increased salt = higher BP, but that increasing blood volume can stabilise BP. 

My understanding of midodrine, which didn't suit me personally (scarily high BP and still presyncopal) as hypovolaemic patients need volume not vasoconstrictors, is that its short acting nature should mean it is out of your system by bedtime as long as it isn't taken too late in the day so shouldn't be contributing to nocturnal hypertension if you only use it when you intend to be upright. Did it help you stand, that is the key question?

Have you tried raising the head of your bed at night? I do this in the hope of increasing my volume, but I understand it also helps reduce BP in those with supine hypertension. Also there are a lot of other short acting drug options for reducing the supine hypertension if valsartan isn't effective. 

I did try this and whilst I can see how cognitive based measures may help for people with some of the conditions mentioned such as anxiety or phobias around certain foods or electronic devices, it cannot help with an organic illness like dysautonomia. They supposedly offer a refund after 6 months if you are not satisfied, so in another month I can hopefully get my money back. Whether this actually proves to be the case or is difficult I do not yet know. There is kind of a culture that if you don't improve it is your own fault, which I also dislike. I would save your money, try to be as positive in your outlook as possible, pray if you believe in God, exercise if you can, eat as well as you can and you will basically have saved yourself nearly 300 pounds/dollars. 

I believe the people in the testimonials who claim to have recovered from POTS probably had it due to being malnourished and/or deconditioned due to other "illnesses" that are not real illnesses, and once they started eating and moving around more, their "POTS" went away. 

Blimey that looks like a nasty ventricular tachycardia! As I understand it, and I'm no cardiologist, beta blockers work on the sinoatrial node which controls HR when a person is in a normal or at least atrially generated rhythm. What was your underlying diagnosis?

12 hours ago, Peter Charlton said:

my blood pressure is now too high, generally around 147 over 96, so I dont think I should make this any higher. 

I would also worry about taking vasocontrictors as yet another of the many symptoms I developed from the day I took Bisoprolol is a horrendous heartburn that can come and go just like that, but does not respond at all to prescription ant-acids. I am wondering therefore if my ANS is causing coronary vessel spasm

Ah I understand your concern about vasoconstrictors. Beta blockers can raise the blood pressure through unopposed alpha adrenergic stimulation, but I am not sure why this would have persisted after stopping them. 

I too tend towards higher BP, & believe in my case it is as a result of intense sympathetically mediated vasoconstriction secondary to hypovolaemia, so that category of meds is out for me too. I wouldn't touch a beta blocker myself as they reduce cardiac output and cerebral blood flow, although I know some patients with POTS do find them helpful. 

What was it that led to you being prescribed the beta blocker in the first place? 

B x

I have come across a number of studies where glycerol taken orally in varying amounts of water has shown success in temporarily expanding the plasma volume. Athletes were using this some years ago, both to benefit from the volume expansion alone, and also sometimes to mask the effect of doping drugs like epo. It was ultimately banned by WADA due to providing unfair competitive advantages. 

There even used to be a sports drink which made use of this effect called something like Heat Endurance, but it stopped being produced after glycerol was banned from competitive sports. 

I am planning to try adding some glycerol to my salt and fluids to see if I can achieve the same effect, and wondered if anyone else had tried this?

B x

Hi Peter,

I worry too about the long term effects of chronic cerebral hypoperfusion - it can't be good! 

However as a doctor myself I would add that although there is an association between OH and dementia, it does not prove a) that one causes or leads to the other or b.) the direction of causality. For example some degenerative diseases seen in elderly people have both cognitive decline and OH as features. 

It sounds as if your problem stemmed from an event that you can identify, that is not related to degenerative disease or dementia. 

Also on the plus side for you, if your blood pressure drops when you stand up there are a number of effective treatments available for this aimed at raising BP. Have you tried any vasoconstricting meds yet?

B x

I'm glad I found this today. I am thinking about trying swimming.  The hot changing room environment and no compression hose worries me, but it would be so nice to experience some symptom relief for just a short while. 

I did try swimming earlier on in my illness when I wasn't as unwell or deconditioned, but was disappointed the water didn't have the G-suit like effect others have described when standing up in it. I believe I am very hypovolaemic generally though rather than that I have a lot of blood pooling in my lower body, so that may be why. 

One thing that concerns me is that swimming is said to dehydrate you by increasing urine production due to the central blood volume shift - have any POTSies found this an issue or is the consensus generally good?

Thanks for the replies! I tried dropping the salt but found I was peeing even more than usual so have decided to keep it up for now. I also take a small dose of desmopressin at night which can cause hyponatraemia, so guess the salt helps avoid this risk too x   

A beta blocker isn't necessarily a good thing if you have symptomatic low blood pressure. There are alternatives such as Ivabradine to slow a fast heart rate without dropping blood pressure. One suggestion if you haven't already done so is to see a cardiologist who may arrange a 24 hour or longer continuous ECG to track your heart rate. If you have tachycardia at rest that is not provoked by upright posture, this may be another condition rather than POTS such as inappropriate sinus tachycardia.  I would also make sure you have had basic blood tests to exclude anaemia, thyroid disease etc and possibly some endocrine tests to rule out Addison's or phaeochromocytoma. Hopefully you would have had a thorough medical workup before being sent to a psychiatrist, but unfortunately that is not always the case, particularly if you are female. 

On 3/14/2018 at 1:42 PM, Bendymeat said:

You may be suffering from Sheehan’s syndrome which could also explain a whole lot of things.

Thanks Bendymeat! I did have a pituitary MRI which was normal, and testing of all the other pituitary hormones apart from ADH was normal too.  I was hoping for Sheehan's as it could have been more easily treated!

It looks like I will soon be able to get desmopressin on the NHS instead of buying it which is a small win. I only take 50 micrograms at night though which means I don't have to get up in the night to pee, and wouldn't take any more during the day as it doesn't help me stand and I'd have to fluid restrict and be at risk of hyponatraemia.  

Hi, I have just started another trial of fludrocortisone, transitioning from licorice root. Since becoming unwell with POTS 3.5 years ago, once I read about the standard advice to chug buckets of salt and water every day, that's exactly what I've been doing although have not noticed any benefit. I usually take 1-2 teaspoons of salt per day. Licorice root was fantastic for a few months but then the effect wore off. Testing shows I produce no renin or aldosterone. 

One issue for me is that even when sitting, with a perfectly normal HR and BP, I feel constantly lightheaded and miserable, and am certain the blood flow to my brain is very poor. During the first year or two of having POTS, I had a reasonable quality of life sitting and felt unwell only when standing. 

I just came across this study https://www.sciencedaily.com/releases/2018/01/180116131306.htm on the effects of high oral salt consumption reducing resting cerebral blood flow via mechanisms not connected to blood pressure. Granted we are not mice, but the physiology may not be all that different in humans.

I would really like to stop guzzling all this salt. I never added salt to anything before becoming unwell. I also feel that with mineralocorticoid replacement it should not be necessary. As far as I know, people with Addison's disease who are replaced with both hydrocortisone and fludrocortisone get to eat and drink normally. 

What does everyone else think about this? If you have a good endocrinologist or autonomic specialist do they still have you taking heaps of salt on fludrocortisone? Maybe it is different depending on whether you have normal aldosterone production to start with but still have POTS and the fludrocortisone is additional, vs having deficient aldosterone to begin with?

B x